Elizabeth Brooklyn Blair

Archive for the ‘Uncategorized’ Category

Stuff you can get for $400 BIG ONES!

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Elizabeth was recently told that one of her splatter paintings from our recent Friday night paint party in the backyard was worth the price tag of $400.00 big ones!  At five years old, EBB has also been offered a prime spot at a local Scottsdale Art Gallery!  The painting was already donated to PCH and they did not want to part with it.  Can you blame them!  EBB can assure them that the price tag of $400.00 is way too little when compared to the price tag of priceless.  Elizabeth will happily make another painting and what’s even better is the Art Gallery has agreed to give all proceeds made off her painting back to PCH!  WIN WIN all around.  So the question is what would you do with $400.00?

Stuff you can get for $400 BIG ONES!

  • Trade in the dollars for quarters and get 1200 Gumballs or just throw the quarters at your brother’s head.
  • 10 Vials of the chemotherapy drug Preservative-Free Methotrexate – Oh wait, not possible, have you heard there’s a drug shortageL
  • 8.75% of a Nickelodeon Kids Choice Awards ticket in the slime zone.  That’s right $3500.00 to walk the orange carpet and get slimed!  This is why Elizabeth has decided to make this her Make a Wish.  Not possible for her otherwise.  Hopefully, she will be medically cleared for next years show.
  • 1,440 (3oz) Packages of Ramen Noodles.  If you like that sort of thing.
  • 3 hours worth of Balloon Animals by Ed Chi.
  • 133 Boxes of Johnson and Johnson Band-Aids.  Unfortunately, band-aids do not always heal all wounds.

We just decided the best thing you can get with $400.00 dollars is none of the above but what about…

  • Register 20 runners for the upcoming Grand Canyon University RUN TO FIGHT CHILDRENS CANCER this Saturday, March 10th.  Join us and Register to run (or walk) with Team EBB!  We will be wearing our “Beauty Comes From Within the Heart” T-shirts!  If you would like to purchase one beforehand, you can do so at Vintage Style.  Located at 5202 N. 7th St. Phoenix!  They are now just $20.00!  Look for the big poster that says TEAM EBB or just follow the trail of glitter.  This run benefits Children’s Cancer Network.  CCN is an amazing organization, which Elizabeth was graciously able to be a part of a fundraiser for today at the AZ Biltmore.  She soooo strutted her stuff down the runway today all in the name of Childhood Cancer.  She super duper shined!  She giggled and glittered like no other!  And man did she GLOW!  And Yep that’s me her proud mama in the background WOOOOOING!  Classy I know!  I just couldn’t help it.  SO PROUD!  Here’s the link to view Elizabeth’s runway walk.

A special RAINBOWLICIOUS SHOUT OUT to several beauties for helping brighten a very difficult week.

The Whetstine Family – Rainbow My Room!  So Freakin’ Awesome!  You all rock!

The Patton Family – For those rainbowlicious Mickey Mouse Necklaces and baseball.

Shana Maczuga (this one is way overdue) OMGOODNESS!  Thank you thank you thank you so much for the beautiful hand crocheted rainbow blanket.  It is so beyond beautiful and by far Elizabeth’s favorite.  It is such a piece of art as well as a strong source of comfort on very difficult days.

The Chester Family – BEST EBB Rainbow Cake EVER!

Coach Robyn Kellner & Softball Team – GO TEAM EBB!!!

I know, I have not thanked everyone personally, but seriously we could not make it through the days without all of you!  You are a blessing in so many ways.  LOVE TO YOU ALL!

EBB WAS HERE

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FRIDAY NIGHT PAINT PARTY IN FULL EFFECT!

 

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Hi Everyone!  …

Hi Everyone!  If you are planning on running in the run on March 10th with Team EBB at Grand Canyon University check this out!  1/2 off registration today on Living Social.  Brooke, the kids and I will all be doing it again!

https://subscribe.livingsocial.com/facebook_subscriptions/new?id=8&ref=broader_roadblock&skippable=1

Aside

Hi Everyone!  …

Hi Everyone!  If you are planning on running in the run on March 10th with Team EBB at Grand Canyon University check this out!  1/2 registration today on Living Social

https://subscribe.livingsocial.com/facebook_subscriptions/new?id=8&ref=broader_roadblock&skippable=1

You are cordially invited…

WHO? JUSTIN BIEBER

WHAT? 18th Birthday Celebration

WHEN? TODAY, March 1st from 3-5 pm

WHERE? Vintage Style ~ 5202 N. 7th Street (Just north of Camelback Rd)

WHY? Celebrate EBB and Eat Cake

In honor of JB and EBB 

18% OFF Storewide Sale (Today Only)

ReMix – Down with EBB?

It all started a couple of weeks ago with a new lump, which we noticed that formed on Elizabeth’s head just above her original tumor.  The doctor’s were not overly concerned, however, Brooke and I panic at even the thought of her cancer coming out of remission, especially before intense treatment is complete.  It’s very unlikely for this to happen right now, however we were told it’s not impossible.   I had not mentioned it on here, but deep inside Brooke and I have been really stressing about it.  The doctors thought maybe from steroids, maybe skull resculpting or that it possibly felt like soft tissue?  We had been keeping an eye on things and when she got off some of the chemo, we were scheduled for a CT Scan of the area in a couple of weeks to put everyone’s mind at ease.    Well, as you know, yesterday was Monday, and we were at clinic for Elizabeth’s weekly chemotherapy.  I must say it has been a very difficult week for Elizabeth.   The toughest in a long time, actually.  It has been anything but easy peasy lemon squeezy for her.  Although her tummy aches constantly and sliding into first and feeling a sudden burst hit every now and then, she is really hanging in there.  For weeks she has really been enjoying her food, however, eating is causing her lots of terrible pain these days.  She was up most of last night and very uncomfortable for most of it.  She does not feel much like getting out of bed or opening her eyes.  She can not stand for longer than a couple of minutes.  The doctors thought she looked very pale, and were shocked when her counts came back really good.  After a very restless night, I called the clinic this morning and the next thing I know we are doing an emergency CT Scan of her abdomen. They decided to do the scan of her head as well, today!

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Well, today Brooke and I cried the happiest tears we have cried in a very long time, actually the happiest tears I have ever cried in my entire life.  The results showed no sign of cancer in either her head or her abdomen.  I seriously broke down at the news.  And we did find out what is causing Elizabeth so much pain.  It is something called, Gastritis.  The lining of her stomach is severely inflamed and if not caught could have cause a hole in her stomach.  Another wonderful side effect of chemotherapy.  She had been taking meds with her steroids to prevent this, but for some kiddos it’s just not enough.  Elizabeth is one of those kids.  She received some fluids, and some stronger meds and hopefully she will be feeling brand new compared to today in no time.   She already walked to the bathroom tonight and is up out of bed for the first time in a week!

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Elizabeth accomplished several milestones this week.  Not only is she done taking her steroids!  Yippy!   But also, had a visit from the tooth fairy, as well.  After six long months of wiggling this very stubborn tooth, it finally came out!  Daddy pulled it out a few nights ago!  Because Elizabeth has not been walking much these days, big sister, Kate insisted that she would run and get the special “tooth fairy pillow” and Elizabeth insisted that she call her brother at a friends house to tell him the good news.  I sat there on the bed and took it all in as I watched so many memories being made.  I witnessed a true trust between a daddy and his daughter.  I witnessed a true love between three super duper siblings.  It’s a true love with a bond that will never be broken no matter how much they fight at times.  I witnessed absolute joy and happiness in the best way possible last night.  Elizabeth, who is sleeping in our bed again, put that tooth under her pillow, made a wish that the tooth fairy would let her keep her tooth and off to never never land we all went to sleep.  It was about 3:00am when Elizabeth awoke to quickly check beneath her pillow for a visit from the tooth fairy.  She immediately said, “Nope she didn’t come yet.” And she and I tossed and turned for the next hour and a half.  “Mama, are you sleeping?” she asked.  Needless to say I was not and by 4:30 she had eventually dozed back into her cozy little night sleep.  By morning light, the tooth fairy had made her way underneath Elizabeth’s pillow.  She granted Elizabeth’s wish and left her tooth along with a trail of fairy dust and five big buckaroos!  Elizabeth had hoped I could sneak a picture of the tooth fairy, but I too eventually fell asleep and yet another photo opportunity I missed.  The final milestone this week for Elizabeth is that she started losing her hair again.  She is feeling too bad everywhere else to even really care, but we knew it was going to happen and it started this week.  So, Elizabeth is also scheduled to participate in a fashion show this Sunday if she is feeling up for it.  Several pet therapy dogs from the hospital and her friend Zoe are going to be in the fashion show, as well.  This all might be just enough motivation to get her up and moving out of bed.  We are continuing to be strong for each other and pray everyday for God to keep Elizabeth well.  We ask that you please do the same. Thank you to everyone for your continued support through the most difficult time in our lives.  At times we feel like we cannot continue and wonder how in the world Elizabeth can endure all that she does at five years of age.  But, some special friends once told me “I can do hard things.”  And you know what, they were so incredibly right.  I believe in our family and I believe in our strength together as a family united and I believe WE CAN DO HARD THINGS!  No matter how hard, we can do it.   We will continue to get through this.  Thanks Kin and Aimee!  And thank you Katie Chester for sharing your experience as an older sister and helping us celebrate tonight in true rainbowlicious EBB style.   We put candles on that cake tonight and sang around the dinner table “You down with EBB?  Yay, you know me!  Who’s down with EBB?  All our family!”  Which reminds me…We, the Blair’s, (and I mean all of us) are writing some new lyrics from OPP to EBB…I hope you all go to bed singing it tonight…

 http://www.youtube.com/watch?v=qmuFlaFYdgE

2012 – Army with Harmony

Kickin’ Cancer Now

Kickin’ Cancer Now

Kickin’ Cancer Now

 

E sidekick, slay it now

 

EBB, how can I explain it

I’ll take you frame by frame it

To have y’all jumpin’, shall we singin’ it

E is for Every, B is for Body fightin’ cancer

The last B, well… look to yourself for the answer

You ever had a brother, sister, mother, father, best of friend

You get the worst of news about your daughter, son that makes your head wanna spin

You get home, wait a day, it’s what you wanna know about

Then you stand up, speak out, and it’s a movement that you scream and shout

 

It’s not a front, F to the R to the O to the N to the T

It’s just a rainbow chemotherapy

It’s EBB, time other people’s what you get it

There’s no room for cancer, there’s just room to slay it

 

How many people out there know just what I’m gettin’ at

Who thinks it’s wrong ‘cos they say enough kids ain’t gettin’ it

Just too little funds for these little peeps to be kickin’ it

Well if you do, that’s EBB and you are down with it

So if you want, here’s your membership

 

Chorus:

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (Every last mommy)

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (All the family)

 

As for the kids that lost their battle, EBB means something fearless

The first two letters are the same but the last is something different

It’s the heroic, courageous, strongest – Its fight the longest

It’s a seven letter word rhymin’ with gravely

 

I won’t get into that, I’ll do it…ah…sorta bravely

 

I say the last B…hmmm…stands for bravery

 

Now ya all here comes a rainbow, send a rainbow back to me, now tell me exactly

 

Have you ever known a boy or girl who had a battle for their life

How about an aunt or uncle, husband or even a wife.

Well, if you do then you know what I’m getting’ at

 

Now don’t be shocked ‘cos if you’re down I want your hands up high

Say EBB (EBB) I like to say with pride

Now when you do it, do it well and make sure that it counts

You’re now down with the cause that counts

 

Chorus:

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (This whole party)

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (This whole party)

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Run Mama Run!

I sat for the first time in awhile to do homework with the kids last week.  This task felt completely foreign to me.  I felt like a new parent trying to figure everything out again.  I felt like I followed Silly Sally to town walking backwards upside down and I was left feeling dazed and confused.  I’m not sure I’m quite ready to take on all this responsibility of third grade math and second grade spelling.  Isn’t the responsibility of getting my daughter through cancer enough responsibility in a day?  On top of childhood cancer, I have been struggling with what to do with my boutique, Vintage Style.  Even though I most of the time feel frozen, life does still continue to go on.

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I have been trying to lease out my boutique space for a couple of months and I have come up with nothing.  Many are interested, but no one is interested enough to take over the responsibility of paying the rent.  As you may know, Vintage Style is a small boutique I was planning to open before Elizabeth was diagnosed with cancer.   Actually, the grand opening was scheduled the same week.  This had been a dream of mine since early on while attending design school.  Last year, I found a space, signed a lease, hired marketing, crafted all the things I love and put everything into this little shop, which I called Vintage Style.  I was so excited to be going back to work, doing all things that I love. Brooke and the kids were extremely excited and proud of me.  I could see it in their eyes.  I was being the role model to my family that I always wanted to be.  A strong, powerful working Mama!  So now, here I am…a much, much different woman.  Different things are important now.  Helping Elizabeth kick cancer in the buttcrack, that is my number one everyday most important task.  No matter what happens, that will never change.  But, I will say I feel a little less strong and powerful of Mama these days.  If I cannot handle all of the other responsibilities with my family at home, how am I supposed to wrap my head around running a business?  Thank goodness for my super duper helpful husband who picks up so much of my super duper slack these days.  I struggle with the fact that he has believed in my dreams so much (more than I think I believed in them myself) and all I can deliver are tears and regret for making him believe in me so much.   He works all day, sometimes in the middle of the nights, he comes home, does laundry, coaches baseball and still manages to fit in a run every now and then.  Running was our thing together before all of this evil.  Sunday mornings were our date”day”.  We would run the bridal path, making each other laugh, racing to the finish (I did win once) and then breakfast.  I ran for the first time in six months the other day (Elizabeth made me) and that too felt foreign to me.   Everything about our life is different.  EVERYTHING!  So the bottom line is this, I’m in a lease, with a store ready to go, but my brain and heart will not let me run it the way it stands.  So what do I do?  Can someone please just tell me so my brain can stay on autopilot and I will just continue to walk around in this daze.  I don’t enjoy being like this.  I have always been so organized, so on top of tasks, so put together with life, but ever since the doctor spoke those words, “Your daughter has cancer.” I’m just a super duper Silly Sally treading in a sea of guilt no matter what I do.   Cleaning the house and opening this store do not matter.  My daughter surviving cancer – that is what matters.  Loving each other – that is what matters.  Being a kind person – that is what matters.  I feel sorry for people who have different priorities that matter.  I feel sorry for the mama’s that feel the need to talk about other mama’s trying to do good for their community.  I have been blessed to open my eyes to what is truly important in life and live life for the things that truly matter and not feel the need to impress or keep up with anyone.  I feel really lucky to not only got EBB but also to be down with EBB.  BTW, if anyone ever has a connection and can get Naughty by Nature to rewrite and sing their song with EBB Lyrics, I would forever be in debt to you!  With that said, this brings me to the EBB Foundation.  You all know it.  It’s this awesome little Foundation that has been inspired by Elizabeth Brooklyn Blair, to help bring more awareness to childhood cancer and inspire families to enjoy the simple pleasures of life together.  It is the one thing that makes me feel a little stronger these days about making a real difference in the world besides raises three beautiful children that are doing the same thing. 

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I live and breathe everything childhood cancer these days.  It is constantly on my mind.  I feel like fighting childhood cancer is my purpose in life.  It’s my purpose forever.  It has to be.  So here it goes…Do you think if I open Vintage Style with the proceeds benefiting EBB Foundation this will awaken my brain and allow my heart to fill with rainbows?  Just as I am writing this, I feel a sparks fly inside of me.  Brain working or not, this is the plan!  Elizabeth, Kate and Bryce think the idea is so EBB!  Elizabeth wants to help me run it!  She would definitely add some spice to it!  I’m sure she would redecorate in rainbow colors, but would compromise for her mama if I insist they were all pastels.  Maybe that’s the answer, open Vintage Style as an everyday fundraiser for EBB Foundation.  Proceeds of the store go towards Elizabeth’s Foundation to help create awareness for childhood cancer and raise money for research.  I am thinking this could be the answer.  So for now this is the plan, Imma be opening, Vintage Style, which will benefit EBB Foundation.  We will open its doors starting on Tuesday, February 21th!  Come By, Say Hi, and Help Kick Cancer Bye Bye!

 

Vintage Style Benefiting EBB Foundation

5202 N. 7th St.

Phoenix, AZ 85014

(Located on the West side of 7th Street next to Floral Keepsakes)

 

Hours of Operation

Monday – Saturday

10:00-5:00

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Ms. Donnell will be helping me run things over there.  For those of you who do not know Ms. Donnell, she came into our lives and blessed our family just days before Elizabeth was diagnosed.  She has been a blessing everyday since.  Ms. Donnell is a cancer survivor and has helped me deal with a lot of “humming crap” that cancer brings along with it.  She helps us completely out of the kindness of her heart.  She loves our family and we love her!  Ms. Donnell has offered to volunteer her time at Vintage Style.  That’s right, volunteering a super duper amount of time to help our family.  I cannot think of a more EBB gesture!  Thank you Ms. Donnell.  You so GOT EBB!  You fill our hearts with rainbows, daily.

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So there you have it!  As Elizabeth would say…”Run Mama Run”  So that’s exactly what we are going to do.

Creating rainbows

Team EBB

Just Rollin’ Along

So for Valentine’s Day, Brooke, Elizabeth and myself all went over to Chamberlain College to join the Bone Marrow Registry.  It was so easy!  Something I may not have been clear about before, is that IT IS FREE to join the registry!  They do accept donations because there is a cost associated with adding new donors of about $100.00, but it is not required in anyway.  We met Aubrie, who is not only one of the local representatives for Be The Match, but also a nine year survivor of Non-Hodgkins Lymphoma.  Brooke and I immediately teared up, as she shared that she is a survivor.  To meet a survivor, brings us to tears.  I know that will be my Elizabeth someday.  We are planning an EBB Roller Skating Day soon (I will post details as soon as I have a date) and I will try to have Be the Match there to register people.  It is literally 4 swabs of your cheek.  No pain, but lots to gain by entering yourself in the registry.  Many of these kiddos need stem cell  (bone marrow) transplants.  They especially need more Hispanic and African American donors in the registry.  You can go to www.bethematch.org to find out more information on bone marrow registry.  It was a very uplifting day.  When the kids got home from school they showed me all of their valentines.  Elizabeth’s teacher Mrs. Beebe stopped by with a special box of Valentine’s for our special little girl, as well.  PURE SWEETNESS are the teachers at Cross Roads Preschool.  Elizabeth will hopefully get to go back to school just in time for the end of the year party.  She misses school so much.  But lately she just hasn’t felt up to doing much of anything except mega munching on everything imaginable.  Yesterday she wanted everything from `ribs at Bobby Q’s to mac n cheese from Boston Market.  She has been snacking on not only chips and salsa but also pizza and guacamole.  She just wants nothing to do with vanilla ice cream or grape anything.   Vanilla used to be her favorite flavor, but steroids have pretty much ruined that one.  She is about halfway done with the steroids and it is going really well.  She is beginning to look like my little chipmunk with all the fluid she is retaining in her cheeks and tummy.  She’s my sweetie.  She is in really good spirits all of the time, lately.  She looks forward to her bath time and walks in the stroller.  Yes, can you believe it!  Walks in the stroller.  I invested in a jogging stroller this week at Hissyfits, our local consignment store.  I thought my stroller days were over.  Unfortunately, I sold them all just before Elizabeth was diagnosed.  Elizabeth really looks forward to the walks outside because her legs are just too weak to walk extended periods of time.  Sometimes we go out several times a day.  She LOVES it!  She falls asleep sometimes, just like the good ole days.  Yep, I remember those days, rollin’ around da neighborhood poppin’s wheelies with the stroller.  E is getting me exercising, which feels so good right now.  I have not taken the time to exercise in so long.  I really miss the peacefulness it brings me.  Although, I wonder if it is considered exercise when you walk a half a mile up the street to Smeeks, the local candy store, to purchase a half a pound of candy and back home?  If you’re using the candy as weights perhaps?  But don’t worry with the way Elizabeth is making me get her and I out running, I’ll be doing half marathons again very soon.  She’s the best personal trainer a gal could ask for.  I’ll add that to her resume along with slaying cancer.  Things EBB is really tough at doing!

Sign and Send! SO EASY!

Speak Now

We are the voice for our children

Letter is already just sign and send.  SOOOO Easy!

http://www.kintera.org/c.8hKOI3MFIjI2E/b.6440521/k.82B3/Action_Items/siteapps/advocacy/ActionItem.aspx?c=8hKOI3MFIjI2E&b=6440521&aid=517204

Also, if you would like to write/email President Obama here are the links…

http://www.whitehouse.gov/contact/write-or-call#write

http://www.whitehouse.gov/contact/submit-questions-and-comments

Thanks for filling my heart with rainbows,

Elizabeth

 

Be the Match

Instead of spending $200 on dinner, consider doing this today.  Brooke and I will be there closer to 11:00.  If you can’t make it today, you can order a kit to be sent to you through the mail.  To enter the bone marrow registry it only takes a swab of the cheek.  I think there are misconceptions that it hurts.  It’s not painful in anyway to enter yourself into the bone marrow registry.  We are showing the love in the way of…

Be the Match

http://marrow.org/Pages/DonorDriveSearch.aspx?key=002-4-09686

Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases need a bone marrow transplant. Doctors search the Be The Match Registry to find donors for their patients.  Help save a life

Happy Valentine’s Day