Final Chapters

A few months ago I wrote one of the hardest updates I've given to date. I announced our team's decision to bring Break the Grey to a close, and asked for prayers as we navigated that transition.

In the meantime, we have been working on finding a place for the items that have been donated to Break the Grey while seeking to honor our mission and the donors' original intent to give to kids with cancer. We have been in contact with the directors of two different organizations, and last week the final transition was made.

When our team was trying to decide where to allocate our remaining resources, both Meghan's Mountain and Aiden's Lego Legacy came to mind.  These organizations - both founded by cancer survivors - are dedicated to supporting and encouraging families facing childhood cancer. As we discussed ways we could contribute to both organizations with our resources, we thought: why not do both?

Meghan's Mountain and Aiden's Lego Legacy are partnering together in December to host the second annual "Larger Than Cancer" Christmas Party for kids in current treatment for childhood cancer and their families. I am pleased to write that all of the items that were donated to Break the Grey that had not yet found a home - toys, decorations, parent gift baskets, etc. - have now found a home here.

Last week we sorted and organized all of the remaining items and sent them off with the director of Aiden's Lego Legacy to be stored for the upcoming party. When I think about how Break the Grey started - as a party to bring joy, hope, support, encouragement, and a brief distraction from the childhood cancer world - I cannot think of a better place to send the last of our resources!

Some of the very first items donated in January 2006 - when I tried to fit it all into my bedroom

Eventually we moved all of the items to the basement

Sorting items for the first Break the Grey party in January 2006

After 8 years and countless generous donations by generous people, this is what was left to sort in June 2014

Look at all of this stuff!

And yes, my hair is a lot shorter (and less fluffy) than in 2006 - I shaved my head in May to raise money for childhood cancer

The final product - all organized and ready to go to its new home

For those of you who have been involved in Break the Grey and would like to continue serving families facing childhood cancer, here are a list of ways you can continue to give:

1. Give time, give money. 

Volunteer and/or donate to Meghan's Mountain and/or Aiden's Lego Legacy. Each organization has a Facebook page with more info.

Donate your time not only to kids with cancer, but to other kids facing a variety of health crises at Kosair Children's Hospital. Contact their volunteer office for more info on getting involved.

2. Accessorize.

Gold is the "color" for childhood cancer awareness. (Each specific cancer has its own color as well - for example, lymphoma is lime green, leukemia is orange, brain tumors are grey, etc.) Wear a gold ribbon (or lime green, orange, grey, etc.). When people ask, speak up. Make them aware of the reality of childhood cancer. 

3. Walk, run, hike, bike.

Sign up to get moving for kids with cancer! Join CureSearch, an organization dedicated to funding the cure for childhood cancer, for their walk to end childhood cancer on September 13, 2014 in Louisville, KY. Click here for more info.

Feeling a little more ambitious? The Leukemia/Lymphoma Society teams up with Nike to host athletic events all over the country to beat blood cancers (which includes acute lymphoblastic leukemia, the most common childhood cancer). Or take a road trip to Memphis, TN to participate in the St. Jude marathon.

Up for an adventure rather than a run? Join up with CureSearch for the Ultimate Hike, and tell childhood cancer to "take a hike," or with Norton Cancer Institute here in Louisville to bike to beat cancer.

4. Eat, drink, and be merry.

Fuel up after all of that moving with a glass of lemonade benefiting Alex's Lemonade Stand, or eat at Chili's. Each year in September, which is childhood cancer awareness month, Chili's donates a portion of their proceeds to childhood cancer research at St. Jude Children's Research Hospital. Many local Chili's support local childhood cancer care in their area as well.

5. Watch a movie.

No, I don't mean "The Fault in Our Stars."  I'm talking about "My Sister's Keeper," which came out in 2009. While the situation the movie describes is pretty atypical, it depicts what life is like for a family facing childhood cancer. Watch it, talk about it. Get a preview here. 

6. Use your outside voice.

Speak up. Pass it on. Talk about it. Write about it. Tweet it, post it, blog it, share it, copy and paste it. Use your words. Use your influence.

7. Cut your hair or shave your head.

The stereotypical image of a child fighting cancer is one without hair. The St. Baldrick's Foundation decided to utilize this image to the kids' advantage. Now, every March, St. Baldrick's events are held nationwide. During these events, people form teams and have people sponsor them to shave their heads. St. Baldrick's is one of the leading fundraisers for childhood cancer research. Not only does the money go to a good cause, but it also lets the kids know that we're behind them and we support them in a tangible way.

If you're not brave enough to shave your head, just get a haircut! Donate any time to Wigs for Kids, or grow your hair out and wait until next spring at the annual Chili's Clip for Kids event, where you can cut your hair and raise money directly for the kids fighting cancer locally at the Addion Jo Blair Cancer Center at Kosair Children's Hospital.

8.  Donate blood.

Many chemotherapy drugs wreak havoc on kids' bone marrow, leaving them in need of blood and/or platelet transfusions. Your donations really are life-giving. And before you play the "I can't do that; I'm scared of needles" card, please think about the kids in question here. Think about what they endure on a daily basis (if you need a little help, spend some time clicking through our blog or go to YouTube and type in "childhood cancer").  Could you endure one poke to save one child's life?

9. Join the bone marrow registry.

Many kids undergoing cancer treatment will need a bone marrow transplant, either as part of their front line therapy or as part of their treatment if their cancer returns.  Unfortunately, some kids die waiting because a suitable bone marrow match cannot be found. You could be the one. Sign up with the National Bone Marrow Registry to be the match.

10. Pray. 

Pray for these kids. Pray for their families. Pray for hope, joy, endurance, patience, peace, courage, perseverance, and comfort. Pray for the message of the cross to meet them where they are - and for the hope of Christ to come flooding in. 

To those of you who have volunteered and partnered with us in time, money, space, vehicles, manpower, prayers, toys, and other donations as we've striven to not just check off many of the items on the above list, but to advance the Kingdom of God here on earth - my deepest and sincerest thank you. Whether you have been with us for all eight years or only for the past one or two, you have made a difference. I am forever thankful for your partnership. "I thank my God in all my remembrance of you, always in every prayer of mine for you all, making my prayer with joy, because of your partnership in the gospel from the first day until now. And I am sure of this, that He who began a good work in you will bring it to completion at the day of Jesus Christ." - Philippians 1:3-6

To our Break the Grey families - thank you for allowing us to enter into your lives and to take part in your story. Thank you for setting an example for all of us and for sharing your beautiful children. Know that we still love you, and we're always with you and for you. "For we are glad when we are weak and you are strong. Your restoration is what we pray for." - 2 Corinthians 13:9

Although this is the end, I plan to keep this blog open as a resource for education, advocacy, and awareness of childhood cancer, as well as a means of encouragement and support for families still walking this road.

But mostly, I'm going to leave it open so that we can remember and celebrate the faithfulness of God.  Because no matter what happens, we are still loved and He is still Good. Always.

Finally, know that I, as the founder of Break the Grey, am forever thankful - for our families, for our volunteers and our partners, and for our God, and words will never be enough.

"Yes, Lord, walking in the way of Your laws, we wait for You; Your name and renown are the desire of our hearts." - Isaiah 26:8

Always, always, always hanging on to hope, believing in miracles, and never, ever giving up,

Sarah

As Seasons Change

Some of you may have noticed that I have not yet written about our annual parties this year.

That’s because, for the first time in 8 years, we are not hosting them.

I’ll be honest: this is an update that I have procrastinated giving for a while now.

Break the Grey, as a formal ministry, is drawing to a close.

Please know that this decision was by no means made easily or flippantly.

This is a decision that I have personally agonized over and thought, prayed, and journaled about for over a year. Even as I was involved in the process of planning our parties for 2013, I was beginning to think and pray about the future of our ministry.  

One year later, our team is in the process of writing Break the Grey’s final chapters.

Why? Why halt a ministry that has flourished and has done so much good as it has grown?

Honestly, the reasons are, admittedly, mostly personal.

Last year I stepped away from our party at the Addison Jo Blair Cancer Care Center at Kosair Children’s Hospital because I work there full time as a RN. I was not sure how Break the Grey fit with my professional boundaries. I helped plan it, though, and I attended the party at the Cancer Center at Riley Hospital for Children.

It was then that I began to question things a little further. Throughout the year, I constantly tried to balance my professional integrity at work with the work I was trying to do behind the scenes with Break the Grey. It was a tricky balance to navigate.

The more that I tried to figure things out and the more that I tried to juggle, the more I uncovered a hard truth: I felt obligated to keep Break the Grey running.

I first came up with the idea for Break the Grey when I was fifteen-years-old. The first party at Kosair Children’s Hospital was realized in 2006 when I was sixteen-years-old. With the prayers, support, encouragement, and hard work of many volunteers, Break the Grey took off. People donated time, money, toys, food, and other resources to help reach as many families as we possibly could. And we did.

Since its beginning in 2006, Break the Grey has served approximately 300 families in at least five different states. We consistently hosted two parties every year – one in Louisville, KY and one in Indianapolis, IN – from 2007-2013, with only one in 2006. We also participated in events throughout the year including fundraisers for families, walks/races to raise awareness for childhood cancer, and speaking engagements to spread childhood cancer awareness.

So why stop now?

To put it very simply: because obligation is a bad reason to keep a good thing going.

Because this is tricky business, let me continue to make a few more distinctions to try to make things a little clearer:

1.     This transition of our ministry does not signal the end of my – nor others’ – passion for children and families facing childhood cancer or other life-altering illnesses. I’m still passionate about it; I still love it. Which brings me to number two:

2.     I need personal boundaries. Many of the other nurses on 7 West raved about the Break the Grey party last year and asked why I wasn’t there. I explained the issue of professional boundaries and they all thought that Break the Grey would still be ok – the party side of it, at least. But Break the Grey was designed to be a year-round ministry, and I work with these kids and families thirty-six hours a week at minimum; I need personal boundaries so that I don’t lose my passion entirely. 

3.     Our ministry is not ending because the need has ceased to exist. There is still a very real, deep need for childhood cancer awareness and for spiritual and emotional support and encouragement for the families actively engaging the battle. This need will be there until childhood cancer is no more. But, to quote a popular song, “I tried to carry the weight of the world, but I only have two hands.”

Know that I do still very much feel called to meet the needs of families facing childhood cancer – as do many others who have volunteered with us. For a season, that was through Break the Grey. Now, for me, it is as a RN. I don’t feel like I can do both and be in a healthy place mentally and emotionally. (That’s not fair to the people that I love and who have to put up with me on a daily basis.)

One question that has been consistently raised throughout this process is why not pass the baton? Why not transfer the leadership of Break the Grey to someone else who is willing to keep it running?

Without going into too much detail and opening a whole new can of worms, this is something that our team has explored. Ultimately, we have concluded that Break the Grey was for a season, and that season is coming to an end.

With all of this said, we do ask that you continue to pray with and for us as we aim to finish strong. We want to be good stewards of the remaining resources that have so graciously been donated to Break the Grey, staying true to the donor’s original intent and Break the Grey’s mission. Please pray for wisdom and discernment as we move ahead with this process. 

I will continue to update this blog as our team makes final decisions.

Lastly, know that I – along with everyone involved with Break the Grey – am eternally thankful for you who have given, supported, encouraged, and prayed with and for us.  You have truly helped us to advance the Kingdom of God, and we are incredibly grateful for your partnership. 

Always, always, always - Hoping, Believing, and Never, Ever Giving Up,

Sarah

Pray

Hi, all! I realize that I haven't written an update in over 6 months, and that I am grossly overdue to give one. After our last "big" event, The Color Run, life got busy and time got away from me and I have been sorely behind. For that I do apologize.

That said, we do have our Break the Grey parties scheduled for this year! Our first one at Kosair Children's Hospital is tomorrow night - Friday, February 22. Our second one at Riley Children's Hospital is tentatively scheduled for Wednesday, March 6.

In the past 6 or 7 months since I've written, Break the Grey has undergone some changes and some decisions have been made to help protect the integrity of our ministry. Since I last wrote, I have begun working full-time as a night shift nurse at Kosair Children's Hospital on 7 West - the unit where Break the Grey originated and where we still host annual parties. As a nurse, I get to interact with and care for these families that I once knew via Break the Grey on a more frequent basis. Because I now have a professional relationship with them as their nurse, I was unsure of how this would influence my involvement with Break the Grey. It could be argued that going to my workplace on a night off to volunteer with Break the Grey and see the kids and families outside of work is overstepping my professional boundaries and/or compromising my professional integrity. A conflict of interests, if you will.

In order to preserve my professional integrity and protect the privacy of the nurse/patient relationship that I now have with the kids and families on 7 West, I will not be attending the party at Kosair Children's tomorrow night. I have several fantastic volunteers who have stepped up these past few months to plan, organize, and prepare for the party so that I could step away. I have full confidence that they will love these families well and that I will hear nothing but a great report in my absence.

I do, however, plan to attend the Riley Children's party, since I do not work there and there is no conflict of interest with their organization.

All of that said, please be in prayer for the party at KCH tomorrow. Please pray also for the upcoming party at Riley in March. And please keep the leadership of Break the Grey in your prayers as we continue to process and discern how to continue to conduct our ministry with integrity, whatever shape that may take.

As you are praying for our events, please also pray for our families.  Since Saturday, February 16, two of our kiddos have passed away and one has relapsed. One of those most amazing kids was JP.

JP Peters, age 12 - May 19, 2000 - February 16, 2013

I met JP a while ago when I was beginning my treatment for an immune deficiency - even though they live in South Dakota! JP had many health issues, one of them being an immune system defect exacerbated by his underlying primary diagnosis, HSAN. JP's family - especially his mom, Deanna - was a tremendous source of encouragement and support for me during my diagnosis and treatment, even as they endured untold depths of suffering with JP. Through each and every procedure, lengthy hospital stay, surgery, and treatment, JP had a smile. He was an incredible little boy; one who loved baseball, fishing, and going to school. He was the eternal optimist, and truly loved life and those with whom he spent it.

JP defied so many odds in his short life. So many, in fact, that I more or less assumed that he was invincible. His death came as a shock to me, and I am absolutely heartbroken for his family. One thing that I do know though is that JP loved Jesus, and that when he took his last breath here on this earth, his next was in the presence of his savior. Please, please, please pray for his family in the days ahead - for dad, Jason, mom, Deanna, and siblings Matthew and Julianna.

In the words of JP's mamma: "Grace like rain."

Hoping, Believing, and Never Giving up,

Sarah

Congratulations, Patrick!

Yesterday we ran the Color Run in Louisville in honor of Patrick. Patrick was diagnosed with leukemia on July 21, 2004 when he was 5-years-old. He underwent 3 years and 2 months of chemotherapy.

Patrick at age 5

He and his family enjoyed over 2 years cancer-free! Then, a bone marrow biopsy confirmed that the leukemia was back. Patrick relapsed on April 22, 2010.

Patrick and I at Camp Quality 2010 - the summer after his relapse

Since that day 2 years ago, he has been enduring an intense chemotherapy protocol. After 106 weeks of harsh chemo, Patrick will receive his LAST chemo treatment today! I am so proud of him and his family and am so incredibly happy for them as well!

Please say a prayer of thanks for Patrick and his family today. Pray also for complete healing of Patrick's body and that he would remain cancer-free forever!

Way to go, Patrick! 

Patrick, now 13, at Camp Quality, July 2012

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids - The Color Run!

Today was race day! Today, roughly 20 people met as part of Team Break the Grey to run/walk (nobody crawled, to my knowledge) a 5K (3.1 miles) for 5 of our families! We ran/walked for Nick, Chloe, Adam, Patrick, and Katie. We had a fantastic time! Check it out:

Break the Grey t-shirts turned super hero capes! The kids and families we ran for are the true super heroes!

Before we get to the rest of the pictures, I have to share a cool story to share about the picture below. The woman standing in front in the white tank top (and not the Break the Grey shirt) came up to our team before the race and said that she just had to come tell us hi when she saw our shirts, which said, "Break the Grey: fighting childhood cancer." Her son is 2-years-old and is a childhood cancer survivor! He was diagnosed at 14-months-old and is now a survivor! It made my day that she came up to us to tell us thanks and ask for a picture with our team. Way to go, Team Break the Grey!

Meeting and encouraging another childhood cancer family before the race

Team Break the Grey

 Pictures from the start line waiting on the race to start

During the race - headed past the yellow zone!

After the race!

All in all, I think it's safe to say we had an awesome time! What a fun way to show support for our families! I think Dan's face, pre-and-post-race, says it all - we had a BLAST!

Thanks to everyone on Team Break the Grey for coming out today! Thanks to all of our volunteers for helping us make it happen! And thanks to our families for allowing us the honor and privilege of running/walking in solidarity with you. We love you!

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids - Tomorrow!

For those of you joining us on Team Break the Grey for the Color Run in Louisville, it's finally here! The race is tomorrow morning - Sunday, July 29! If you are on Team Break the Grey, please read this for some last minute instructions.

The race begins at 8:00 am at Slugger Field on the corner of Witherspoon and Preston. Festivities and last second pre-race sign up and packet pick up begins at 6:30 am.

Our team is meeting next to Slugger Field on Preston Street at 7:00 am.  Members of Team Break the Grey will be holding up bright signs so you know where we're gathering. Look for the following signs to figure out where we are and walk to them:

You should have picked up your pre-race packet with your race bib, Color Run t-shirt, and a few other items from the Galt House Hotel yesterday or today, or had someone else get it for you. If you forgot or didn't have time, don't panic. You will be able to sign in and get your stuff at the race. You will want to get there earlier than 7:00 if you still need to get your stuff.

According to the Color Run people, traffic is going to be horrendous. I believe it 100%! Below is a map of the downtown Louisville area within several blocks of the start line.

All of the green, tan, and orange spaces are spaces you are allowed to park. This is why we're arriving early - to give people time to park and walk to Preston Street where we will be meeting. If you look closely at the map, square 17 is where we will be meeting. That is Louisville Slugger Field, at the corner of Witherspoon and Preston. Witherspoon will be closed, so we are meeting on Preston. Again, look for the signs.

If you ordered a Break the Grey t-shirt, you will receive it when you arrive at the race. Lisa Kelsey, one of the Team Break the Grey members, offered to have these shirts made for us this past week. Wear the Color Run shirt you got in your pre-race packet, and you can change into your Team Break the Grey shirt when you get there.

Some things you might want to bring with you when you come:

• Towels, to sit on in the car when you are finished running
• Sunglasses, to keep the dust out of your eyes
• Garbage bags, to put any extra dirty clothes, socks, or shoes in when you are finished running
• Camera
• A plastic baggie, to cover your camera so that it doesn't get dust in it

As of right now, I do not know what we are supposed to do with our stuff while we are running. Leave what you can in the car, bring what you must, and we'll figure it out. You might have to carry it, or you may be able to give it to someone who is walking instead of running.

If you don't have to go somewhere after the race, we'd love for you to stick around and get some after-race team pictures! 

If you have any other questions, take a look at your pre-race document, which I should have e-mailed to you all. If you don't have a copy or have further questions, feel free to e-mail me: seboesing@gmail.com.

And last, but again, most certainly not least, let's remember why we're running our 5K - for 5 Kids!

Adam

Nick

Patrick

Katie

Chloe

See you all at Louisville Slugger Field at 7:00 am! 

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids - Katie

The Color Run is 1 week from today - Sunday, July 29! For those of you on Team Break the Grey, I just sent out an e-mail with the pre-race info packet attached and some notes of importance for race day. If you signed up to be on Team Break the Grey and did NOT receive an e-mail from me, please e-mail me and let me know so I can send you the pre-race packet: seboesing@gmail.com

This week I'm going to introduce you to the last (but most certainly not least) of our 5 honored kids: Katie.

Katie was 8-years-old when she started having frequent headaches, cough, congestion, and fevers. On the third trip to the doctor they ran a CBC which showed an extremely elevated white blood cell count. They immediately sent Katie and her family to the hospital for more testing. The doctor that met them in the ER told them that based on Katie's labs, he thought it was cancer.

On November 20, 2008, Katie was diagnosed with acute myeloid leukemia (AML).

Katie's white blood cell count was so high that she needed to go to the ICU. She had x-rays, aphaeresis (draining extra blood cells from her body), IV lines placed, chemo, spinal taps, bone marrow biopsies, a heart echo, and blood, platelet, and plasma transfusions. Her initial spinal tap showed leukemia cells in the spinal fluid, so intrathecal chemo (chemotherapy injected into the spine) was added to her treatment protocol.

After one week in the ICU, Katie moved to the oncology floor to continue her treatment plan. She underwent months of inpatient chemo. We first met Katie at our Break the Grey party in 2009, and she was beautiful, inside and out.

Katie and her mom in 2009

After a long and hard battle with cancer and its side effects and complications, Katie completed her chemo and was declared cancer-free! Her hair started growing back and she started to get back to school, friends, and life after cancer.

 I am happy to say that it has been 3 1/2 years since Katie was diagnosed with leukemia, and she is still cancer-free! She is full of life and I am so proud of her and her family.

Katie and I at Camp Quality 2010

Katie and I at Camp Quality 2011

This is why we're running: for Chloe, Adam, Nick, Patrick, and Katie. We're running for the kids who have died, the kids who are struggling with long-term side effects, the kids still in treatment, and the kids who survived. We're with them and we're for them.

Check out all the details on the Louisville Color Run next Sunday here. Run hard, and don't stop believing.

Hoping, Believing, and Never Giving up,

Sarah