5K for 5 Kids - Patrick

I apologize for the delay in getting this post up. Last week was a hard one within our Break the Grey family, and I ask for your prayers before I introduce you to our next honored family for the Color Run.

On July 12, we observed the 4-year anniversary of the death of one of our kiddos, Nick.  Also on July 12, another little boy relapsed. Aiden is not one of our Break the Grey kids, but I have spent the past couple of summers getting to know him and hanging out with him at Camp Quality. He is such a sweet, energetic, fun-loving little boy, and I absolutely hate, hate, hate this for him and his family.

Aiden decorating the cupcakes that Chloe's mom brought to Camp Quality a couple of weeks before he relapsed.

Additionally, I ran into another one of our Break the Grey moms within the past week who relayed the news of her child's extensive relapse. And Skyler, another one of our kids, had surgery a few weeks ago to remove one of his kidneys and place a dialysis line. In the month or so since surgery, he is experiencing many complications and is already in end-stage renal failure. He needs a kidney transplant but is not a candidate at this time. I spent some time within the past week with his mom as well.

The weight of everything that our families endure makes my heart heavy and my stomach sick.

With that, let me introduce Patrick to you. Patrick is seriously one of the most courageous kids that I know. He and his family have endured so much at the hands of childhood cancer.

It started on July 21, 2004 when Patrick was 5-years-old. He was diagnosed with acute lymphoblastic leukemia. He underwent 10 months of intense chemotherapy before ending long term maintenance chemotherapy.

Patrick at age 5

Patrick's total treatment time was 3 years and 2 months and was completed on September 15, 2007. This is when I first met Patrick - in 2006 or 2007 - and I remember attending his end-of-chemo party.

Patrick and his family enjoyed over two years cancer free. Then, on April 22, 2010, a bone marrow biopsy confirmed his relapse. His leukemia was back.

Patrick and I at Camp Quality, summer 2010, right after his relapse

Patrick's new treatment plan called for 106 weeks of high-dose chemotherapy.  Thankfully, he is almost finished with his protocol. He is scheduled for his last dose of chemo on July 30.

Patrick, now age 13, at camp a couple of weeks ago

Patrick and his family have navigated their difficult journey with faith, hope, and courage, and I am so honored to say that Break the Grey has been a part of it.

This is why we're running: for all of the kids I've mentioned in the last 3 or 4 weeks. For Chloe, Nick, Adam, and Patrick. Childhood cancer kills kids, leaves long-term side effects, and comes back. It's ugly, but these families are so incredibly beautiful.

Learn more about the Color Run here and more about why we're running it here.

Please join me in continuing to pray for these precious families.

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids - Nick

Today is July 12, 2012.

4 years ago today - on July 12, 2008 - at 9:35 pm, 8-year-old Nick Myers took his last breath here on this earth and the next one in eternity.

For those of you running the Color Run in Louisville in 3 weeks, remember Nick. Run for Nick. Let me introduce you:

Nick was 4-years-old when he was diagnosed with acute lymphoblastic leukemia (ALL), the most common and, ideally, the most curable of the childhood cancers.

Nick, age 4

Nick underwent the standard treatment for ALL - over 3 years of chemotherapy. However, on March 22, 2007, one month before he was supposed to finish his treatment plan, his cancer came back.

More chemo ensued and he went into remission again - no more cancer. Three days before Thanksgiving 2007, Nick relapsed again. He had cancer for the third time.

At this point, the only chance for a cure for Nick was a bone marrow transplant. Over the next couple of months he underwent more aggressive chemotherapy and total body radiation to once again achieve remission. He had his bone marrow transplant on February 18, 2008.

Nick with his sisters, Sam (L) and Gabby (R)

Break the Grey met Nick and his family in May 2008 when we visited the children's cancer unit at the hospital to pass out Mother's Day cards on Mother's Day.

I distinctly remember Mother's Day 2001 when I sat in the playroom of one of the inpatient units at Riley Children's Hospital in Indianapolis, painting a flower pot with child life as a Mother's Day gift to my mom. When she left the room, I buried my head in my dad's chest and cried, because I didn't think it was fair that she had to spend Mother's Day in the hospital with me, separated by 2 hours from her other children. I felt helpless and guilty.

On Mother's Day 2008, I quietly knocked on the door to Nick's hospital room and delivered a Mother's Day card to his mom. We started talking, and a friendship was born. Break the Grey began taking meals to the Myers family and coming to play with Nick's sisters at the hospital to give his mom a break.  Later, his mom has this to say about Break the Grey:


“Break the Grey was such a huge help, and a huge blessing to me and my family. Volunteers from Break the Grey would come and fix us dinners, play with my other two children (who were also living in the hospital with me at the time) and did every thing they could to make our stay and time there easier. I will always be thankful for that. My son was very very ill, but he did remember visits, and toys, and play times. He knew that Mommy was less stressed because of these 'nice people' and though he didn't say much, his smile did." 

One of the most memorable and holy moments in my own journey with Break the Grey came the day before Nick died, as I sat on the floor of his dark, empty hospital room and held his sisters as hospital staff explained, using words they would understand, that the doctors were going to stop giving Nick medicine to make his cancer go away. Everything in me wanted to hold those girls, to run out of the room, and to take them away from the reality that was before them. In that moment I watched their souls grow old, and I watched the most gut-wrenching, beautiful display of love from two little girls to their brother. 

Nick and his sisters, shortly before he passed away

Just over 24 hours after I walked out of that hospital room, Nick passed away in it. 

Now, 4 years later, I'm running. We're running. We're running only miles away from the hospital where he died, to remember him and honor his family and the valiant fight they endured. 

This is what childhood cancer does - even the "best" childhood cancer with the "best" prognosis. Get ticked off - run against cancer. Run for Nick and his family. 

Learn about what we're doing here, and then sign up for the Louisville Color Run here.

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids - Adam

With just under 4 weeks left until the Color Run in Louisville, I want to keep on introducing kids from the Louisville area who have fought cancer and in whose honor we are running the race. Last week I wrote about Amazing Chloe. This past week I had the awesome privilege of serving at Camp Quality, a camp for kids with cancer, and I ran into Chloe's mom, Christy, there! She came to camp with "Cupcakes for Chloe." She brought cupcakes and tons of decorations for the kids to do. It was a lot of fun and even more fun to eat! It was great to see her and catch up with her.

With Christy Newman, Chloe's mom, at Camp Qaulity

This week, I want you to meet Adam.

Just before tumor resection

The above picture is of Adam just before he had his brain tumor, medulloblastoma, removed. He was diagnosed on July 9, 2010, after vomiting for months. In June 2010, the vomiting became accompanied by headaches, and Adam's doctor ordered a CT scan. The CT scan revealed a tumor, and a MRI was scheduled to get a better look. Immediately after his MRI, Adam was admitted to the ICU, and his family was told that a tumor the size of a baseball was growing in the back of Adam's head.

On Monday, July 12, 2010, Adam underwent a 12-hour surgery to remove the tumor. Thankfully, all of it was able to be removed. Unfortunately, it was cancer: medulloblastoma. Adam developed hydrocepaly the day after surgery and lost his ability to walk, talk, and perform activities of daily living. He had a shunt placed, which did not work to relieve the building pressure in his brain, and had a permanent shunt placed on July 23, 2010. Adam spent 15 days in the ICU before being transferred to a rehab hospital. There, Adam began physical, occupational, and speech therapies to regain the function he lost.

After these initial hurdles, it was time to begin cancer treatment: 6 weeks of radiation and 9 cycles of inpatient chemotherapy.

Adam gets to throw a pie in the face of his radiation oncologist on the last day of radiation

Going to 7 West - the oncology unit at Kosair Children's Hospital - for chemo

Treatment had some pretty nasty side effects

High counts dance at clinic

Headed to Camp Quality 2011

Adam did well with his chemotherapy regimen. He was rarely sick, was never admitted for a neutropenic fever, and never developed mouth sores. He did, however, lose several pounds, was fatigued and weak, developed shingles requiring an inpatient stay with isolation, and had low blood counts requiring Neupogen shots and transfusions of blood and platelets. 

Trying to escape the isolation incurred by shingles

Between chemotherapy cycles eight and nine, in September 2011, Adam developed mental confusion and stroke-like symptoms. His parents took him to the ER, and he was admitted to the intensive care unit and diagnosed with bacterial meningitis, likely as a result of his shunt. His condition deteriorated rapidly, and Adam endured two brain surgeries in two days. His last cycle of chemotherapy was delayed to allow time for his brain to recover. Finally, in October 2011, Adam completed both his last inpatient and outpatient chemotherapy treatments! 

Last chemo in the clinic!

"I did it!" - the shirt given to Adam by the oncology clinic after his last chemo treatment

However, Adam’s transition to life post-treatment has not been easy. Shortly after his last chemotherapy treatment, Adam was transported to the intensive care unit via ambulance because of mental status changes. He underwent scans and an EEG, which showed abnormal brain activity. His medical team was puzzled as to what caused this sudden onset of symptoms, but the general consensus appeared to be vasculitis. Adam received thirty days of high-dose steroids to reduce the inflammation in his brain and restore neurological and cognitive function. 

While the steroids worked to combat acute symptoms, Adam still struggles in some areas. He has fallen behind in school, and is being held back a year. He receives extra help throughout the summer, and an IEP has been developed to address his specific needs. 

Many people do not realize the long-term effects that cancer treatment can have, especially on a child. In Adam's case, his heart, neuro-cognitive abilities, and endocrine systems are all being monitored, as all have the potential to be impacted by the treatment he endured. While his cancer treatment is finished, Adam's family still continues their journey as they attempt to anticipate and combat long-term side effects.

Adam and I in the craft house at Camp Quality last week

We're running for Adam. We're running for his family. Would you join us? Would you join us in running in solidarity with his family? To stand up to childhood cancer? 

You can still sign up for the Louisville run here.

Please continue to pray for Adam's family, for Chloe's family, and for all of our Break the Grey families. As always, thanks for your prayers and support.

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids - Chloe

I hate running. I mean, I really hate running. But I hate childhood cancer even more. And so, 5 weeks from today, I will join Team Break the Grey at the starting line of the Color Run in downtown Louisville and take off running/jogging/walking/crawling for 5 kilometers (3.1 miles) to show our solidarity with and for our families, and in honor of 5 courageous kids and their beautiful families.

My training thus far has been inconsistent, and when I do get out and run I'm pretty sure I look like a beached whale. To give myself and others who might be struggling with their training a little more motivation, I have asked the permission of 5 families to share their stories of childhood cancer. Thus, for the 5 weeks leading up to the race on Sunday, July 29, I will be sharing with you the stories of these brave kids and families (and yes, I have their full permission to share stories and pictures).

The Color Run to which we are counting down is in Louisville, KY, which is where all 5 of these kiddos were treated for cancer. We're running a local race for local kids. Sadly, these are only 5 kids in one city, and this does not do justice to national statistics: 

• 1 in 330 kids will develop cancer by the age of 19 in the US
• 46 kids - about 2 classrooms full - are diagnosed with cancer every single day
• There are 30,000 - 40,000 kids in treatment for cancer right now in the US
• 20% of kids diagnosed with cancer will lose their battle
• There are approximately 300 kids in treatment for cancer in Louisville, KY right now
• There are over 1,000 kids in Louisville who are affected by childhood cancer in Louisville, KY - including those who are either currently receiving therapy or who have already completed treatment

So for those of you running The Color Run for Break the Grey in other cities, know that the above statistics are reflected in your city. It would be easy to pick 5 kids facing childhood cancer to honor for your respective races. Let the stories of these 5 kids be your motivation; may they symbolize the fight for all kids all over the US.

And so, without further ado, let me introduce Amazing Chloe.

Chloe was just 4-years-old when she was diagnosed with acute myeloid leukemia on January 25, 2005.

Chloe and her Mom

 Her treatment began on January 28, and consisted for five rounds of intense chemotherapy. She did well with her therapy, and completed the five rounds of chemo.

 

Following chemo, Chloe remained in remission until the devastating news of her relapse on April 7, 2006. She underwent one round of chemotherapy to put her back into remission, and then endured a cord blood transplant on June 16, 2006.

Chloe with her Dad and her older sister, Haley

Chloe was once again in remission! Still, her cancer returned a third time in December 2007. This time, she underwent a bone marrow transplant in January 2008 in attempts to put her leukemia in remission once and for all.

 

Unfortunately, Chloe struggled with many complications from her transplant. She fought a long, hard, and valiant battle, which ultimately ended in the arms of Jesus. After fighting cancer for 39 months, Chloe passed away on June 12, 2008, at the age of 7.

 

This is why I hate childhood cancer. Because of Chloe and kids like her. Would you join Team Break the Grey and run in honor of Chloe? There are still spots open for the Louisville race in 5 weeks! Go here to register.

As you train this week, remember Chloe. Pray for her family. Pray for a cure. Keep running, and never lose hope.

Hoping, Believing, and Never Giving up,

Sarah

5K for 5 Kids

First of all, I'm sorry for the long pause between updates. On a personal level, the past couple of months have been crazy busy and full of lots of life changes. All good, though. Break the Grey is still here, and we're still encountering families affected by childhood cancer or other life-altering illnesses.

I think the last time I wrote a substantial post (not related to our technical difficulties), I wrote about the team that Break the Grey is forming for The Color Run in Louisville, KY. If you need a refresher on what the Color Run is in general, click here. In short, The Color Run is a 5K (3.1 miles) that is taking place all over the US this summer in which participants run in white t-shirts and get doused with colored dust along the route. There are races in many major US cities, including Louisville, KY and Indianapolis, IN - the two cities where most of our Break the Grey families live and seek treatment for their kids. One of our Break the Grey volunteers suggested that this would be a great "Break the Grey" event! Break the Grey = COLOR run! Get it?

Break the Grey has formed a team and running in honor of our kids and families. As far as I know, registration for the Louisville race is still open. Go here to register for the race in Louisville (the race in Indianapolis, according to the Color Run website, is sold out).

So, how does running 3.1 miles just for fun and getting completely messy help support families facing childhood cancer or other life-altering illnesses? The idea behind it is solidarity.

Living with childhood cancer or other life-altering illnesses, enduring a treatment protocol, combating side effects, processing all of it mentally, emotionally, and spiritually, and carrying on with daily life in the meantime has been compared to running a race. By running a race, even if it is only 3.1 miles, we are attempting to say to our families with our actions: "We love you. We acknowledge that what you are enduring is hard. We see that it is grueling and that you are tired. And we are with you. We are beside you. We are here to support you and encourage you. We can't run your race for you, but we will do everything that we can to offset the burden and make it as hope-filled and joy-filled as we possibly can."

To demonstrate this, our Break the Grey team will be running in honor of 5 incredibly cool Break the Grey kiddos. I have asked their parents' permission to run in honor of them and their families, and they all graciously agreed. I will be introducing one family a week on the blog up until race week, beginning next week. For a sneak peek, our 5 kids are Nick, Chloe, Adam, Patrick, and Katie.


If we've got your interest and you want to join us in running/jogging/walking/crawling the 3.1 mile race, here are some extra tid-bits you should know when you go to register:


1. There are Color Runs all over the United States. Louisville and Indianapolis happen to be the closest to many of our Break the Grey families and volunteers. If you want to sign up to run in another city, like Chicago, Dallas, or Washington, D.C., more power to you! You can register a team named Break the Grey and have a blast!

2. You may see on the website that The Color Run does support a chosen charity, but Break the Grey is NOT their chosen charity! Break the Grey and the Color Run are NOT affiliated in any way and Break the Grey will NOT be receiving any money from this event.

3. This is NOT a fundraiser! Again, the Color Run is purely for fun! The Color Run and Break the Grey are not affiliated, and Break the Grey will NOT be receiving any money from the race. This is just for awareness, solidarity, and support. Sign up to run, tell friends and family why you're doing it, write about it, talk about it, speak up about childhood cancer and other life-altering illnesses, pray for our families, and then just have fun!

4. Registration for the Louisville Color Run is still open! Slots fill up fast though, so sign up soon if you want to join!

5. There can be more than 4 runners on our team. Don't be intimidated if you go to sign up and there are more than 4 people. The more the merrier!

For those of you already training for our Color Run, I want to leave you with some updates on some of our kiddos. May their courage and determination inspire you as you run. And, while you're running, feel free to pray for them and their families to pass the miles.

Patrick, one of the 5 kids we're honoring with this race, just began his last 4-week cycle of chemotherapy for relapsed leukemia. Please pray for strength and grace for his family. Please pray that they would have peace and finish strong.

Skyler and his mom traveled from southern Indiana to Cincinnati Children's Hospital today to be admitted for surgery tomorrow. Skyler was born with a rare kidney disease and is having surgery to remove both kidneys and to place 2 different dialysis lines. His medical team is expecting the recovery time to be about 2-4 weeks inpatient before he can transition home. Please pray for comfort, peace, courage, joy, and hope for Skyler and his mom. Please also pray for Skyler's quick healing - for a non-complicated surgery and recovery.

A huge praise from Gisele: her scans about a month or two ago indicated a possible relapse in her lungs. However, when the surgeon went in to remove the masses, they found that it was histoplasmosis, NOT cancer! Gisele remains cancer-free! Praise the Lord!

Adam had open heart surgery about a month or so ago and is recovering well. His family - another one of our 5 that I'll introduce you to in the coming weeks - just returned from a retreat on the beach in Florida. Please continue to pray for Adam as he battles the after-effects of his therapy, and for his family as they all deal with the emotional side effects of cancer.

JP continues to have ongoing medical struggles. Please pray for his complete earthly healing and for his family's mental, emotional, and spiritual well-being as they adjust to their new normal.

As always, thank you all for your prayers and support! Sign up for the Color Run and tune in next week to meet our first family!

Hoping, Believing, and Never Giving up,

Sarah

Technical Difficulties

Over the past month or so we've experienced some technical difficulties with the Break the Grey website and blog. Unfortunately, this will result in the Break the Grey website being inactivated on April 30. I am unsure at this time how this will affect the blog.

Until we can get a new website (and potentially blog) up and running, you can contact us at seboesing@gmail.com. We hope to have a new website up and running soon.

Thanks for your patience as we figure this out and for your continued prayers for our ministry and for our families.

Hoping, Believing, and Never Giving up,

Sarah

Color Run Clarifications

The response to Break the Grey's participation in the Color Run has been awesome so far! I am super excited about it! However, there have been some questions that I thought I'd try to answer:

1. There are Color Runs all over the United States. Louisville and Indianapolis happen to be the closest to many of our Break the Grey families and volunteers. If you want to sign up to run in another city, like Chicago, Dallas, or Washington, D.C., more power to you! You can register a team named Break the Grey and have a blast!

2. The Color Run does support a chosen charity, but Break the Grey is NOT their chosen charity! Break the Grey and the Color Run are NOT affiliated in any way and Break the Grey will NOT be receiving any money from this event.

3. This is NOT a fundraiser! Again, the Color Run is purely for fun! The Color Run and Break the Grey are not affiliated, and Break the Grey will NOT be receiving any money from the race. This is just for awareness, solidarity, and support. Sign up to run, tell friends and family why you're doing it, write about it, talk about it, speak up about childhood cancer and other life-altering illnesses, pray for our families, and then just have fun!

4. Registration for the Louisville Color Run opens today at 12:00. Our volunteer who is organizing our team, Esther Volmer, will be forming our team around 12:30 today, so you should be able to add yourself to our team by around 12:45 or 1:00 pm. Slots fill up fast though, so sign up soon if you want to join!

5. There can be more than 4 runners on our team. Don't be intimidated if you go to sign up and there are more than 4 people. The more the merrier!

If you have any more questions, please feel free to contact us. Happy registering!

Hoping, Believing, and Never Giving up,

Sarah