Thursday, October 9, 2014

More than just a jersey

Did you see this?

If you didn''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.

Monday, September 29, 2014

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 
Access Code: RE13

Saturday, September 13, 2014

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 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 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 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:  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.  

Friday, September 5, 2014

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.  

Thursday, September 4, 2014

Go Monkey! Finishing scans tomorrow.

Esther did great today. She has her last scan tomorrow at 9am, and we will meet with the doctor at 1pm. 

I know many, many have been praying and waiting for an update. Thank you.  This is a huge gift! 

We had fun watching the ball machine for about an hour while waiting for her CT scan. She was ADORABLE cheering for the monkey, who swats balls into a hole. "Go Monkey!"  "You can do it!"  "Keep trying!"

"This is what the grasshopper does."

What do you think?  Any resemblance? 

Wednesday, September 3, 2014

One Year Scans, Be Still My Soul

Esther completed treatment for Stage IV, High Risk Neuroblastoma one year ago.  She has been cancer free for one year.  This is a gift, a gift I am wrestling to receive without a "but".

While treatment for cancer isn't the kind of normal any of us would choose, but for the season, treatment was stabilizing.  It set the rules, set the pace, gave us boundaries.  Life was a caged, complicated simple.  For the last year we've floundered a bit trying to figure out new boundaries, a new pace, new rules in this strange reality where things like scans for cancer are a part of every day, no big deal, life.

Here comes a "but".  But it's not a normal part of life.  I wrongly feel an unspoken expectation, maybe assumption, that things like Esther's scans for cancer shouldn't be a big deal anymore.  In an effort to cope, I am nonchalant.  However, inside I'm screaming...tomorrow we are checking to see if one year later my daughter is still cancer free.

When Esther was first diagnosed our wonderful social worker shared a bit of wisdom.  She told us that young children are excellent at coping.  If they feel bad, they rest.  If they feel good, they play.  They don't worry about the next day or even the next hour.

I have been worrying about the next day.  If I own the angst in my stomach it leads to a flood of fear.  Broken and changed relationships, distance from others because germs will rule our lives, medicine, night after night away from my husband, living out of a suitcase, bloody noses, ports, stares, wondering, not getting to be the wife I want to me, being a distracted mother to my other children, losing my daughter.  When Esther was in the hospital and I was home, I would often set the table for 5 children and remember one wasn't there.  I had to put the 5th plate away because one wasn't there.  I worry about setting a table for 4 children.

So instead of actually owning or talking about the flooding emotions, I pretend it's all just an average day.  No big deal.  I'm not honest, and that's not good.  I don't want to be a burden.  I don't want to needy.  I wonder if people are tired of hearing about it.  I haven't been taking it to the throne where mercy and help is found because I feel like I shouldn't still have this need.  I don't think this is what the Lord would have for His children.  He would have us climb up and tell Him more.

I have been reminded, comforted by a hymn over the last several days.  The Lord is on MY side.  I can leave it all to MY God.  He will remain.  He will undertake.  He will care for me, take care of me.  This hymn has been the reminder I've needed.  The surge of anxiety is still there, but the Lord is on my side.  Bear patiently...patiently.  It's okay, it's not all over.  I can sigh relieved.  Patiently.  He will undertake this mess of a woman.

Here's the lyrics and a video so you can listen.

Be Still My Soul, Page CXVI

Be still, my soul, the Lord is on your side. 
Bear patiently the cross of grief or pain;
Leave to your God to order and provide;
In every change, He will remain. 

Be still, my soul: your God will undertake 
To guide the future, as in ages past.
Your hope, your mind, your will let nothing shake;
All now mysterious shall be bright

Be still, my soul: the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's joys restored.

Be still my soul
And praise him

Esther will have scans tomorrow, Thursday, and Friday.  The last three sets of scans have only been a CT scan, but I've requested a more detailed, MIBG scan for this round.  Not because there is anything glaring or necessarily worrisome, but there wasn't any blinding sign of cancer when she was first diagnosed.  I just want to be sure, to ease my fears of leg pains, a slow healing bruise, a cough she's had since November.

Thank you for praying for clean scans.

One more thing...September is Childhood Cancer Awareness month.  After my recent Ice Bucket post, I want to focus on a couple areas.  I hope you heard my heart and my cry for us all to move beyond an awareness and really seek to meet others in that sacred space of empathy.  So, for this September I want to educate and encourage us all to take one step to meet another from a place of empathy.

For today there are two challenges.

  • I've created two pictures you could print and hang in your office, on your door or your mailbox.  Thank you to those of you who have shown social media love by sharing a picture or even changing your profile pic.  Thank you.  You can download and print one of these in a pdf format here.  

  • Write a thank you note to a pediatric oncology nurses or doctors.  Please imagine the lives of men and women who daily care for sweet, precious children who might die.  Imagine the care it takes for them to be gentle, to calm and comfort scared mommies and daddies, to see 1 in 5 of those children die.  Thank them for being brave and kind.  Tell them they are making a difference.  Share that you know it must be hard, but they are doing a good job.  Here's the address for the Children's Hospital in Colorado, but if there is a facility near you, look up the address.  

Children's Hospital Colorado
Center for Cancer and Blood Disorders
13123 East 16th Avenue
Aurora, CO 80045

Thank you for praying for Esther and for entering into empathy with others.  It's a wonderful, wonderful gift.  

Tuesday, September 2, 2014

The first summer in two years

The previous two summers were distracted by cancer and the treatment that went along.  We had to nearly always say "no" to the adventures brought by warm air. We worked hard to catch up and finish our school year last spring in anticipation of a summer of yeses.  Here are a few glimpses of our first summer in two years.

Lost Teeth

Played baseball

Turned Eight

Stayed cool

Went to Glenwood Springs

Celebrated...SURPRISE Dad!!!

Played with dollies, mostly Sofia the First

Took the MAX bus to City Park for the 4th

Ate broccoli

Got pneumonia...then Zinnia...then Esther....

50 miles for each clothespin...4,020 miles of clothespins

Saw an outdoor concert.  Took Selfies.


Swam in the Umpqua River

Slack Line

Ate Pizza...and lots of other goodies

Went to Battery Kinzie, a WWI and WWII bunker

Saw a light house

Put our feet in the Pacific Ocean

Admired Esther's Curls

Went to Mariner's Game

Took a ferry

To a beautiful island with giant leaves, gorgeous views, and gross slugs.

Were flower girls and a handsome young usher

Saw far away friends

Grew some vegetables

Donated hair


Began a new school year

The summer days have wound down and we are once again busy with school.  We are thankful for a cancer free summer without the "no's" it's treatment brings.