109 people, $10,193, and Fun

Before your summer gets too busy, we would be so honored to have you join us  at one of our family's summer highlights, the Brent's Place Kids Cure fun run.

It is difficult to express the measure of love we feel for Brent's Place.  From time to time I whisper a prayer that God would bring us to Denver for the purpose of regularly supporting and caring for families at Brent's Place.  Here's a few blog posts to refresh your memories.

Moving Along, Breathing Deeply

"I called Anthony as we left and I couldn't even describe the facility to him because tears had taken over. If you could imagine a dream facility to delight children (and their families) enduring such a difficult road, this would be the place you would build."

Let us take care of you

"When I was checking in with Allen from Brent's Place he walked through the financial portion of staying here. Because of generous contributors to the foundation that supports Brent's Place, our stay is free. As I was talking with Allen about this and how amazing it is to be able to offer this facility to families at no charge he told me that right now is the time to "let us take care of you."

Only For the Brave

"Brent's place is a refuge for the parents, the brave kids fighting cancer, and their siblings. It is a place where they don't have to worry about getting sick or having a break down. A place for kids to be kids, to make friends, and for parents to not have to explain because they are understood."

We lived at Brent's Place, a home for immune compromised children and their families, for 109 days during Esther's cancer treatment.

We have a wild goal this year, and we will need LOTS of help to get there.

 109 team members and $10,193.  

Join Team Esther

Saturday, July 30, 2016

General's Park in Aurora, CO

www.kidscure.org

We would like to have a team member for every day we lived at Brent's Place.  Would you be one of the 109 team members?!

Out of town?  That's okay!  Join the team, make a donation, share your fundraising page, and raise some money.  Then on July 30th, take a fun walk or hike.

Why 10,193?  The cost for one day's stay at Brent's Place is $93.  If every team member raises $93, we will raise enough to provide another family 109 days of safety, healing, and incredible support.

• Join Team Esther: bit.ly/JoinTeamEsther    We are hoping for 109 Team members to represent each of the 109 days we lived at Brent's Place.  So far we're at 10...so WE NEED YOU!

• Donate to Team Esther: bit.ly/DonateTeamEsther.  You can just donate the team or pick a fundraiser from the bar that says, "Would you like this donation to be credited to someone's fundraising page?" and give them a donation!  We have a team goal of raising 109 days worth of money for one family...over $10,000.  We can do it with your help!

• Print out this Team Esther Flyer and collect donations in your 'hood or workplace.  

The run is FUN for the whole family.  There's obstacles and dance parties, water fun, a pancake breakfast, and games to play after the run.  Check out this video!


Kids Cure for Cancer Recap from Studio Hippo on Vimeo.

We look forward to seeing you this summer!  It will be as much a gift to to us as it will be to the family whose stay we work together to provide.

Treasures

My grandpa passed from this life at the end of June, a little over 5 years after my grandma went before him.  This last month has been flooded with wonderful memories blanketed by a heavy measure of grief.


My grandparents had the coolest attic.  It is like Lucy's wardrobe in the Lion, Witch, and the Wardrobe.  My grandma would lead us past the coats, through the opening, and we would enter a grand new world.  I can vividly recall the sound of wire hangers covered with paper from a dry cleaner and the rush of warm air, thick with the smell of attic.  I love the dry scent of an attic.

Thankfully my cousin, Manda, took lots of pictures!  
She snapped this one before she led some of the great grandchildren though the empty attic.

There were some spectacular clothes in the attic.

I have a horse skull on my head.
Grandma had fantastically odd
collections!

Before the sun came up three weeks ago was the first time I've been in that attic without my grandma.  We joined my parents, brother and sister, aunts, nieces, nephews, and cousins to clean out lifetimes of treasures.  Box after dusty box I just wanted to shout "stop."  Maybe, if I closed my eyes tight enough, I could imagine her showing me the hundreds and hundreds of McDonalds toys she'd collected, or the bones she'd gathered from walks through the forest, or the letters my grandpa sent her while he was in the Navy.  But, we had a job to do before the heat made the attic unbearable, so we kept going.  The boxes and treasures from the attic filled the entire backyard, and then some.

We spent the day sorting through these attic treasures, collecting what we might like or what was meaningful to each of us.  Then at the end of the day we went through the house.  It's funny the things that stand out.  It wasn't until the following weekend I found what would be my prize.  

Passing through every room I grew in love for my grandparents.  My grandpa built most of the house himself, adding a basement, bedrooms, and an entire master level to their tiny house on Tennyson Street.  He loved my grandma, like in the movies loved her.  Her heart was sealed with his.  He doted on his wife, giving her the best of everything.  Doing everything he could to make her dreams come true.  The spectacular thing is that her dreams generally involved caring for others.

My grandma collected swans. When my grandpa began a frog collection,
she boxed most of them up leaving hilarious notes.
"This box contains swans.  Moved to make room for frogs.  Too Bad.  Oh Well"

"Swans moved to make room for frogs.  Sorry swans.
Too bad you have to have to stay in a box."

At the end of the day I found myself heavy with grief.  A good cry accompanied me on my drive back to Ft. Collins.  With every room, the reality that my grandparents are gone, and their home is no longer theirs was more than my heart could bear.  I wanted to collect everything, to take everything with me.  There I was, squishing my eyes tightly closed, hoping I could sear the memories onto my heart.

The following weekend there was a big garage sale.  I again left my house before the sun arose.  As I made my way down Mississippi, the familiar glee of the drive to my grandparent's house brought a smile to my face.  I giggled at the thought that there I was, a grown woman, bouncing in my car because I was almost to Grandma and Grandpa's house.  Oh...do you see the love they poured over us?!  At the end of the final day as we were bagging what was left to donate, I noticed a small, black travel alarm clock.  My heart thrilled because this is the clock that sat on the beside table in the guest room.

For several summers before I began working, I spent a week with my grandma.  It began when I was turning 13.  Grandma "needed help" getting ready for a new school year.   She was a media technician at Lincoln High School in Denver.  I helped her clean overhead and film projectors, sort films, set up VCRs, and get all of the classrooms ready for the modern day technology.  My grandpa, a general contractor, was out of town working on a job.  The people he was working for were letting him stay in his camper at their house.  I remember commenting how nice the people were who let Grandpa stay at their house.  At the end of the week when she drove me home, I arrived to find my grandpa's camper at my parents house and when I opened the front door, I was greeted by a new wall in our living room.  The wall provided me with my own room.  

For at least the next two years I spent this week with my grandma.  It was special to spend the week with her and my grandpa.  Their home was always welcoming and refreshing, full of unconditional love.  I had fun helping at her school and happily awoke with the beep of that little black travel alarm clock.  The last time that alarm clock woke me was in 2003, the morning of my cousin Angela's wedding.  It's batteries long spent, earlier this week I put fresh ones in the timepiece set the alarm.  It awoke my tears as I could smell the smells of my grandparent's house, imagine the comfortable bed with fresh sheets, and the anticipation of a day spent with my grandma.

Today I spent much of the day sorting out the things I brought from Grandpa and Grandma O'Neill's home. I was again feeling like I wished I had more.  Things were never all that important to them and will never replace the love they've given, but I am thankful to have some memories from their home.  I can look at these things, close my eyes, and remember.

I began the morning by installing a new flood light.  The sensor on ours was broken.  This came from Grandpa's garage along with a crate of tools Rourke has enjoyed having.  He and Grandma were always providing for others out of their pantry or garage.  They are examples of people who freely, happily gave their time, talents, and hearts to others.  They were thrilled to provide.  While the provision of needs was a joy to them, they were most satisfied when they nurtured.

They built a cabin the mountains for us all to enjoy and even share with our friends.  For their 50th wedding anniversary they rented the best rooms at the Hotel Colorado in Glenwood Springs and treated their children and grandchildren to a weekend getaway.  They brought us dinner on our birthdays, even when I was in college.

This is a picture of my old college bike with the squeaky brakes.  Not a fancy bike because my pelvis, broken in a car accident at 16, doesn't sit well on a bike.  It was just sufficient for getting to class.  I was pregnant with Rourke, so there was definitely no riding of this bike!  It was covered in bindweed.  My grandparents were avid bike riders, even biking across Ireland.  Grandma thought this was hilarious and sent the picture she took to her brother, Uncle Louie.  He drew this picture and mounted it to a tiny wood fence.

This painting of main street in Georgetown, also by my Great Uncle Louie, was above the couch in my grandparent's family room.  It looks like it's always been above our piano.

Metal plates from their living room.

I've always loved this big set of silverware.

Today was a mix of smiles and tears.  I think that's how grief goes.  I hope these things hanging in my home will prompt the same emotion in my children (and Lord willing, grandchildren), that their mom was a refreshing source of unconditional love.  Bill and Betty O'Neill are treasures.

A perfect day to turn nine

Oh...these sweet, tiny babies...

Here they are, one day old.  Lydia on the left was just 4 lbs 15 oz and Frannie, the only time she's ever been bigger than her sister, at 5 lbs 8oz, on the right.  

What a telling photo of these two treasures.  Lydia, calm, peaceful, patient.  Frannie, full of passion. 

Tonight we had a small party and look at these beautiful young ladies now.  

Lydia is still calm, peaceful, and patient.  This girl was delighted to receive a wide brimmed hat and a parasol.  

Frannie is still passionate.  Here she is both aware, but blissfully ignorant, of her charm.  Delighting all of us with her joy. We named her "Francesca" because we prayed she would live a life of freedom.  Her name is so fitting.   

Today was a perfect day to turn 9.  

After coffee cake for breakfast, they enjoyed a special date with Daddy.  A trip to the CSU flower gardens and lunch at Bisetti's.  Ravioli's for Lydia and Spagetti with meatballs for Frannie.  They enjoyed their first bites of creme brulee.  

A bright, vibrant cake for our budding artist.

 And a simple, sweet cake for Lydia.  We named Lydia after the generous caretaker, "Lydia" of the Bible.  We've prayed she will care for and serve others with her time and talents.   She has learned to sew.  In fact, the dress she is wearing was stitched by her with her own machine.  Her name means "beautiful light".  Isn't she?

 Along with aunts, uncles, cousins, and grandparents, we are thankful that both Esther and my dad are here tonight, cancer free.  A simple picture with stunning significance.

God provided spectacular decoration for the perfect day to turn nine.

More than just a jersey

Did you see this?

If you didn't...here's what happened.  Devon Still, a Cincinnati Bengal, was kept on the practice roster when cut from the team.  He was recently moved to the active player roster.  His daughter, Leah has neuroblastoma.  Sales from his #75 jersey have raised over 1 million dollars for Cincinnati Children's Hospital.  So cool.

Remember, he plays for the Bengals.  Last Sunday night the Bengals played the New England Patriots.  The Patriot's cheerleaders did this...

This is a huge display of empathy in SO many ways.

On Sunday when we tuned in to watch the Bronco game, our kids immediately noticed the pink.  The kids asked why they were all wearing pink.  We explained that October is breast cancer awareness month, and lots of people wear pink things to support women with breast cancer.

"But they didn't have gold in September," Lydia, our insightful 8-year-old daughter commented.

Many parents of kids with cancer work hard to try to spread awareness.  Could a page of the the newspaper turn gold for a day?  Could the Empire State Building or the White House shine gold lights?  Could a hospital which treats both children and adults display gold ribbons during September?  Most of the time the answer is no even if the parents offer to do all of the work themselves.  A lot like the reasons for research deficiencies, it costs too much money, the population is too small, or my personal favorite "no one would know what it's for" (um...that's the purpose).  So, parents move on, doing what they can in their circles, but feeling discouraged, unsupported.

October hits, and it feels like a punch in the gut. Pink newspapers, big pink ribbons on the state capital building, pink grocery shopping bags, pink cleats and towels and arm bands and whistles.  How come our kids aren't rallied around?  Why don't they wear gold for kids?

When these ladies set the pink pom poms down, and proudly stood wearing the Bengal's #75 jersey, I can only imagine the tears of Devon Still falling because these ladies noticed.  Mine fell because they noticed, a soul touching gesture of empathy...they noticed.  It was more than just a jersey.

Jewelry Fundraiser Postponed

Just a quick post to you know the Jewelry Fundraiser I had scheduled for Tuesday the 30th is going to be postponed.  Kids are diagnosed with cancer every day of every month, so October is fine too!  Robin will still donate her commission.  I'm sick and need to rest.  I'll set a new date for when I'm feeling better and can really enjoy time with others.  Here's the info to access the catalog if you'd like to place an order now.  You'll have to call or email Robin to actually place your order, but all of her info is on the website.

View the catalog online at www.robinegger.mypremierdesigns.com 
Access Code: RE13

Fundraising Through Bengals, Bags, and Bling

First, things, first. 

How are those letters coming along?!  Do you remember my challenge to send a thank you note to a pediatric oncology doctor or nurse?  You can remind yourself here.  I've heard reports of people printing pictures and posting them in their offices.  Good job!  Thank you.

Look at Esther and our friend, Thomas!  Don't they look wonderful?  Thomas is a friend from our homeschool program who was in treatment at the beginning of Esther's journey.  I love this picture.

 

You'd never know looking at them that one is missing a kidney and the other is missing an adrenal gland.  You'd never know they share a similar scar on the top of their left chest.  They look so healthy!  And for the most part, at this stage in their lives, they are.  I am thankful for this.

One of the most disheartening things about childhood cancer is the nominal amount of money driven toward research.  Much of cancer research is funded by pharmaceutical companies as they have an interest in the profit from the research.  Research for pediatric cancer is not profitable, so children are left with what the government is willing to spend, about 1%  (or less) of the giving other big cancer fighting organizations receive, and with private donations.

Given the state of our educational system, it's easy to expect the government isn't shelling out tons of money.  In fact, they only give 4% of it's cancer research budget to all 12 varieties of childhood cancer.  While more children are surviving cancer today than ever before, kids are still being treated with drugs that have not been improved for over 20 years.  Supportive care and follow up have been big boosts in the cure rates.  For example, after Esther's rounds of chemo she would get a shot to increase her white blood count.  This was not always available and because it took so long for an immune system to recover, kids would often die from a secondary infection.

The FDA has only approved 2...TWO...new drugs for children in over 20 years.  Oncologists have been able to work with doses and timing, but what is available to use for children is either a highly toxic, 20 year old formula or something that is being researched.   According to St. Baldricks, over 60% of childhood cancer survivors will face chronic health problems, and 1 out of 4 will have severe or life threatening illness because of the treatment they recieve.

National Health Institutes has even more sobering numbers:

Research has clearly demonstrated that late effects contribute to a high burden of morbidity among adults treated for cancer during childhood:[2,9-11]

• 60% to more than 90% develop one or more chronic health conditions.

• 20% to 80% experience severe or life-threatening complications during adulthood.

The Children's Oncology Group has many details about some of the specific problems here.  Both Esther and Thomas will likely experience at least one of these late side effects due to the severity of their treatments.  Esther will probably experience several.  Exposing my "soft underbelly" as some friends like to explain it, I'll casually state I'll take her.  But, I am having a hard time actually accepting that there will be lifelong follow up.  Just in the next few weeks Esther has four appointments to address some treatment related issues.  Those will likely lead to more.  I just want it to be a big thing that happened and shaped us and is in the past, not something that continues...that's another post for another day.  Back to research....

Research is happening and those researchers are being excellent stewards of the money given.  They are having some successes, but largely in part of the generosity of private donors.  Furthermore, research isn't available for every child.  Only a certain number of children are allowed on a study.  If they only have 5 spots, and you're number 6, it can be very difficult to find another treatment plan and it will often result in treatment at a different hospital or in many cases, in a different state.  Children in poorer countries? They are fortunate to get a 20 year old chemo.  This is an issue one of Esther's doctors has passionately researched and dreams of changing.  How cool would it be to bring cures to children who have no hope of survival?!   The research can't happen there, but we can help bring the results to those families.

We can come at this in a couple ways....it can feel so overwhelming.  Any money given to research is just a drop in the bucket, is it really helping?  That outlook is completely understandable, and there are ways to help in a more tangible way.  Maybe you're a person who wants to be a part of the life saving research, even a small part.  Here are three ways to pursue both of those reasonable, neither one is right, outlooks on the problems of childhood cancer funding.

1. Cincinnati Bengals' Devon Still Jersey

Many of you have heard about the recently cut Cincinnati Bengal player whose daughter has neuroblastoma.  The team did Devon Still a solid, keeping him on the practice squad so his daughter could continue to receive insurance benefits.  That was a pretty awesome decision.  His jersey has broken more sales records than any other player's jersey in the history of the team!  Even better...they are donating the proceeds to the children's hospital in Cincinnati.  This is the same hospital Esther was scheduled to receive her

experimental MIBG treatment.  So, maybe you know a Bengals fan who needs a jersey.  Or maybe, like me, you've become a Bengals fan and need one for yourself.  In all honestly, I dislike professional sports for many reasons, but this team has shown such character, proving that when you do the right thing, it benefits everyone.  I'm unapologetically saying I will root for them, even if they are playing the Denver Donkeys.  You can buy a jersey here.

The money donated to this specific hospital will both support research and practical supports of the children at Cincinnati Children's Hospital.

2. Bags


Who doesn't love a good tote, bag, or purse?  My friend, fellow mom of multiples, and continually, faithful supporter of our family, sells Thirty-One Gifts.  This month she is donating all commission from any of her sales to Brent's Place.  This is a great place to get teacher gifts, holiday gifts, and useful things for your home.  There is an amazing special this month, with any $35 order you can get the All-Day Organizing Tote for just $15.  I think I'll be getting one.  My other favorite tote is the XL Utility...I use it all. the. time.  You can order through Kim's website until September 21, and a nice chunk of your purchase will go directly to Brent's Place giving families undergoing the harshest therapies a free, safe, clean home where they can be together.

3.  Bling
My sister, Robin, has been selling Premier Designs Jewelry for over a year now.  She has a goal of raising $5000 during the months of September and October and splitting 100% of her commission between Brent's Place and St. Baldrick's, a WONDERFUL foundation for childhood cancer research. This fundraiser is for both opinions!

There are many beautiful options for all the ladies in your lives.  Teachers, wives, friends, sisters, moms and daughters alike.  There are two options...you can come to my house, Tuesday, September 30, at 6:45pm for some food and drinks where you'll be able to see and touch and try on many of the pieces.  If you've never been to my house or think it will be weird if you show up...DON'T!  Please come!  Even if you don't want to purchase anything, I'd love to see you and talk with you and hug you.  Please come, email me for my address.  If that doesn't work, but you'd still like to order, you can view the catalog online and then call or email Robin with your order.  


To view the catalog, please visit: http://robinegger.mypremierdesigns.com/.  Click "Browse the Catalog" and enter the access code RE13 to check out what Premier has to offer.

Maybe you want to host a party?!  She is gifting each hostess who books a party with the beautiful "Hopeful" necklace above.  A sweet choice as it's gold, the childhood cancer awareness color.  Every time you wear it you can tell the story of how you knew a little girl who had cancer, that you helped support research for kids with cancer, and gave families going through the most brutal therapies a free, safe, clean home.  If you are in Colorado, she will come to you, but if you're out of state, she can do a catalog show.  Visit her website for all of her contact info.

Here's a tid bit of info, due to a couple of cancellations, she still has all $5000 to raise!  Let's get her on her way to generous support of Brent's Place and St. Baldricks.

Maybe none of these suits you and you'd like to just make a donation...go for it!  Here's a few organizations to consider:

• St. Baldrick's
• Cure Search
• Because of Ezra  This is a neuroblastoma specific organization.  His family lives in Florida and work hard to honor all neuroblastoma kids.
• Alex's Lemonade Stand  This organization supports all childhood cancers, but has some neat programs for schools and school aged children.  It was started by a neuroblastoma warrior.  
• Brent's Place has a wishlist, maybe you can fulfill some specific needs?
• Gabby's Bags  Esther received one of these and we used it, and it's fun contents, throughout her treatment.  Another charity started by a oncology patient.
• Your local children's hospital oncology unit.  They can use funding for supplies, but also, their art therapy or childlife departments have needs for new toys, craft supplies, books, and other activities.  Here's a really cool story from Children's Colorado featuring Esther's art therapist, Pat, and our friend, Izaac, who we met at Brent's Place. 
• Donate blood.  Oncology patients with little bodies need lots and lots of it!  

Thanks for considering ways you might be able to help this month.  

Clean Scans, Special Girl

Esther's scans were great today. No abnormal uptake. She had one vertebrae that looked a little different, and they would have wanted to do an MIBG to take a closer look, so I'm thankful for the gut instinct to ask for it ahead of time. There are many reasons this spot looks different, one big one being it is in the same area she received radiation.

I was reminded in a different way how God has a specific plan for each of us today. We chose the name "Esther" because we liked the thought of praying for her to be victorious. God certainly had a plan in that. However, one of, if not the, most famous verses from the book of Esther is found in chapter 4, verse 14, "...And who knows whether you have not come to the kingdom for such a time as this?"

God has given Esther a sweet, trusting, patient, thoughtful personality.  He made her this way.  We love her and strive to parent each of our children to be blessings to others, but God make her ready for the task ahead of her.  The MIBG scan is almost two hours of lying still.  This, and her previous scan a year ago, she did without sedation.  Most kids are given sleepy medicine.  If given the choice, Esther might choose sleepy medicine, not because it's too hard for a 5 1/2 year old to lie still for two hours, but because she liiiiikes sleepy medicine ;).  

This machine comes in CLOSE.

Often we've been asked if all of our children are like Esther.  In some ways, because of God's grace, they are.  But in other ways they are not.  God has equipped Esther to walk this road.  He has set her up for success.  He sets us up for success.  I am too busy focusing on the obstacles rather than putting one foot in front of the other.  I can learn a lot from this little girl.  

She does have some additional pulmonary, physical and speech therapies we need to pursue to help navigate some of the treatment side effects, but because she's been cancer free for a year, we won't have to do scans for 6 months!  

Thank you for hearing our hearts and our fear.  Thank you for holding our hands and for entering this road with us.  Thank you for praying.  God is good.  That is the biggest comfort of my life.  God is still good if the scans were different.  He is good, the same, always.