Dear Friends~
Heidi is going to kill me, but I have hijacked her blog!! Happy Birthday Sweet Heidi! We wish you a day filled with love, sparkle and rainbows!! You are simply amazing in too many ways to count. The world is a better place with you in it. What a great day to celebrate the true spirit of GOTEBB, enjoying all the simple joys of life. We love you!
Nothing that’s what. At least with Elizabeth’s bone marrow. It looks like Maintenance will have to wait one more week. She did not make counts again this week to be cleared for maintenance. SOOOOO we are really hoping next week will be the magic week Elizabeth starts her year and a half maintenance therapy! Although Elizabeth would say this week was the magic week (I will tell you why in a minute) It seems like we have been waiting forever! Not much really happened in a week. Her ANC has stayed about the same. But, I have a feeling about next week. IT IS GOING TO BE A BIG SPARKLICIOUS WEEK WHERE THESE LEMONS OF OURS TURN INTO THE SWEETEST LEMONADE POSSIBLE. So Elizabeth has been talking all week about how she wants a pet hamster. We took our dogs to Pet Smart to get check ups last week and she spotted the so very cute “dwarf hamsters”! Adorable indeed, but needless to say a dwarf hamster is not in our future according to the doctors and Daddy. Do they realize who they are dealing with? Do they realize who they are telling no? Elizabeth doesn’t take no for an answer. She never has and she never will. That’s just how she rolls, strong and determined! Which is why she is making big changes with this no good very terrible problem we call, childhood cancer. So even though she has begged, pleaded, batted her eye lashes and smiled from ear to ear (lipstick and all), the doctors and daddy are still telling her no, but somehow she still managed to have a little rodent show up ready to make a nice cozy home in Bryce’s closet this weekend. Yep, when all else fails use a magic penny and throw it in a fountain or so Elizabeth would say. We found a mouse this weekend living in Bryce’s seriously cluttered closet! I have decided a yard sale is in our future and so for lack of cleaning out EVERYTHING over the past 8 months as well as moving homes in addition to closing a home furnishings store, I believe we could stand to make some serious cash for EBB Foundation with a yard sale. So a yard sale it is… We may even offer our new furry little friend for sale since we can’t keep him. Let the raffle begin…starting bid $20.00 Comes with a kennel and spinning wheel that never stops spinning and if we could possibly have visiting rights or babysit once in awhile that would be awesome! A mouse running on a spinning wheel kind of sums up how I have felt for awhile now, waiting for counts to come up and be cleared for Maintenance. Running on a big gigantic wheel trying to get somewhere but getting nowhere. I guess I’m not surprised that Elizabeth awoke from a nightmare last night. “Mama, I had a nightmare.” As she sobbed next to my bed. “Oh baby, about what?” as I had her lay next to me. I mean it could be so many things, considering the last 8 months. All the pokies, yucky medicines, bone marrow aspirations, spinal injections, losing her words, losing her legs, losing her hands, losing her smile, losing her hair twice, injecting poison almost daily into her little bitty body that makes her feel beyond yucky at times. It’s been a very scary 8 months! She said, “Mama, just hold my hand, please.” As I grabbed her hand, her tremor was worse than it has ever been. I can’t imagine trying to relax with that feeling of constant shaking. It was soothing to her to just have me hold her hand so that she could have stillness and rest a moment. My baby has gone through so much. TOO MANY SCARY, NASTY, HORRIFIC, events from childhood cancer which deserves so much more attention than it gets. I made a vow a long time ago, that I was devoting my life, forever, to slay childhood cancer. After last night I could not be more sure of anything to fight for! In case you were wondering, her nightmare was about a mouse with a needle for a nose so there you have it. (Pokies and finding a pet mouse all in one) I have to give a BIG shout out to Girl Scout Troop 274, with their EBB Fundraising Event, which I heard through the grapevine was quite a success! I hear they raised $1500.00!!! WooooooWhoooo! Way to go girl scouts! You are so BEAUTIFUL!!! Thank you Girl Scout Troop 274! If you want to help SLAY childhood cancer here are some upcoming ways you can help! 
It has been a VERY busy week. Where do I even begin? I know!
Peace Love Rainbows
We started the festivities on Friday with a blood transfusion bright and early at clinic, which gave Elizabeth EXTRA SUPER DUPER energy for a Very Rainbowlicious Tea Party with the Chester Girls! It was the best ROY G BIV Tea Party EVER!!! The girls wore the fanciest skirts they could find. Everything was rainbow from the place cards to the creamy rainbow cupcakes. But, the best surprise of all was…THEY HAVE A RAINBOW ROOM!!!! This room is the Super Duper Duper BEST! It is a one of a kind free for all to paint space which those children will absolutely no doubt look back on at their childhood and say, “Remember how awesome that rainbow room was! ” It has such a Peace, Love, EBB about it. It is the best space I have EVER SEEN! Thank you Chester Girls for hosting the most rainbowlicious, magical tea party in history and sharing your rainbow room for the afternoon!
EB (aka Easter Bunny) arrived right on schedule at our house and EBB was the first one to notice and get everyone up at 5:30am! My favorite part of the day by far! The kids all found their baskets filled with candy. Bryce got a sling shot and the girls each got the Moxie Doll with the changeable wigs. They love them! Did you hear that Mattel has said they will make a one time production of 10,000 Beautiful and Bald Barbie Dolls and donate them to hospitals across the US? This is great to hear that the doll is getting made, however, we need to get Mattel to produce more than 10,000 dolls. This does not even cover the amount of children that will be diagnosed this year with childhood cancer, not to mention the daughters whose Mama’s have cancer or the children dealing with alopecia or even the siblings and friends of these individuals. You can sign a petition on the Beautiful and Bald Barbie fan page on facebook to try and get Mattel to step things up and sell the doll so that it is available for all children.
So Monday came and…Hi Ho Hi Ho it’s off to clinic we go…I have been extremely anxious to hear the words “You are cleared for maintenance!” Before we can hear those words, Elizabeth’s counts have to recover and come back up. So far, they have just been dropping. She had an ANC count of 133 this week. So she pretty much cannot fight any type of infection off right now. She has received several transfusions over the last week, and luckily they all have gone very smooth. I have been looking forward to maintenance because I clearly thought this would get a little easier. But as the doctor handed us 5 new chemo prescriptions to have filled to start on Monday with counts permitting, I was very clearly wrong about anything getting easier. I have to admit, it was a little discouraging, but when I look back at a year ago, and how we did not realize how sick our little girl was, we have really come along way in a years time, having kicked childhood cancer in the buttcrack for almost 8 months makes me so proud to say ELIZABETH IS IN REMISSION!!! And our hope for this coming Monday is that she will be cleared for maintenance and we will keep kicking cancer in an even bigger stronger way for many others!
Kate and Elizabeth on Easter one year ago.
My LOVES today!
So there are some really beautiful people I need to thank tonight! I have had a TON of BEAUTIFUL people lifting me up in so many BEAUTIFUL ways lately! I have people contacting me about doing fundraisers for EBB often. It’s amazing and I could not be more excited! This is only the beginning of the EBB Movement! I always knew she was special, from the minute she was born. She is making changes in this world! But, don’t just watch it happen. Come and be apart of it! So…do you remember that Super Duper fundraiser a couple of weeks ago? The one where Jim Atkins held an acoustical concert at the Cresent Ballroom to benefit EBB! Well, his lovely wife, Amy brought a check by this week for $5700.00!
Can you say…HOLY HUMMING FABULOUS!!!
I knew the event was going to be perfect from the minute I walked in, because there right in front of my eyes on the chalkboard behind the bar was a beautiful rainbow!
Peace Love Rainbows
This is so incredibly wonderful and I just want to thank Jim and Amy Atkins for all the beauty you have shown towards EBB and truly letting her life touch your hearts. So whoop there it is $5700.00 to fight childhood cancer!!!
Also, I want to send out a special shout out to Gena Seivert for organizing the amazing TEAM EBB for the LoziLu Mud Run a couple weeks ago and on top of it raising an additional $660.00 for EBB Foundation!!! You SPARKLE with amazing beauty!!!
If you want to get more involved there is another upcoming event to support EBB Foundation today…
Craft & Bake Sale Presented by: GIRL SCOUT TROOP 274
When: Saturday, April 14th 10am-2pm
Where: 831 E. Desert Park Lane (7th St, 2 blocks S. of Northern)
BE there or be square! Get Down with the EBB Movement
How much mud could a mud mama run if a mud mama could run mud?
Try and say that one 3 times really fast! Well, all I can say… those Mama’s can run tons of mud amazingly! Team EBB represented in full force on Saturday at the Lozilu Mud Run as the largest team with over 60 members! We had a start time at 10:20 and started it off with the DJ playing OPP by Naughty by Nature, which got me doing jumping jacks of joy! I was so excited in fact, that I biffed it through the first mud river trying to splash everyone. Yep the photographer was right there and snapped a picture of it! SO awesome! The obstacles were super duper fun, the costumes were FREAKIN’ rainbowlicious and I could not have asked for a better group of women to kick cancer in the butt crack with! Between the heat and mud we looked like chocolate covered tamalees by the end. It was so hysterically fun and the best time I’ve had in a long time! A very very special THANK YOU to everyone who has let Elizabeth’s life touch your heart and not just at the surface, but deep within to your soul. Thank you for wanting to make a difference with who you are and the causes that you stand for. Thank you for recruiting others, thank you for spreading the word, and especially thank you for covering yourselves in tons of mud as a gesture of your love for Elizabeth!
So even with all of the fun times, I still managed to have two moments of tears on Saturday. The first was when I saw Elizabeth’s friend Zoe standing there ready to run for Team EBB. I am tearing just thinking about it as I write. You all may remember Elizabeth meeting Zoe on the 7th floor at PCH New Year’s Eve. Her and Elizabeth hit it off immediately and everyday after that when she was in the hospital she would ask me, “Is Zoe here?” “Can we go and see Zoe?” She adores her so much! Elizabeth is 5 and Zoe is 17, but Elizabeth has a connection with her and they are both bravely kicking lymphoma in the knee. Seeing Zoe in the fight for her own life standing there tall, bald and proud with a look in her eyes saying “Cancer you have messed with the wrong girls and YOU WILL NOT WIN was enough to make any mama tear. She is amazing and I am honored that she came out. The other moment was when someone asked me how we came up with the tag line “Kicking Cancer in the Buttcrack”. I began tell the story of how my friend Natalie headed up a cheer when Elizabeth was first diagnosed which went…Rah Rah Ree, Kick Lymphoma in the Knee, Rah Rah Rass, Kick it in the (other knee). Every time Elizabeth gets ready to go into surgery or under anesthesia we chant that cheer over and over, but Elizabeth quickly began adding different body parts to each new verse. Her favorite is always Rah Rah Ree Kick Lymphoma in the BUTTCRACK! The memories of all she has conquered and bravely faced over the past seven months is overwhelming for this mama to think about when it comes to my beautiful five year old child. I get very emotional thinking about it. My heart aches to hear about other children continuing to be diagnosed and knowing what it is like to take on the biggest, scariest, toughest battle as a family. Although we have got our very magical date of August 23, 2013 when Elizabeth will received her very last chemotherapy and we will start to be at clinic a little less, there is always a kiddo that is going to be there a little more and that breaks my heart. I WILL NEVER EVER STOP FIGHTING FOR THESE CHILDREN! Thank you thank you thank you for showing so much love and support!
Super Duper ExCiTeD for MUD RUN tomorrow! GO TEAM EBB!! I will keep you posted on if this Mama survives the mud…
After a long day at the shop, We are all ready for Funday Sunday at Vintage Style for a Spring Chick Festival with Slime, Glitter Eggs and Live Chick Photos! Lots of new amazing items!
Vintage Style
Sunday – 10-4
5202 N. 7th Street, Phoenix 85014
Elizabeth’s Weather Report…”Nothing but Rainbows in sight!”
We also think this should say EBB LIVE!
Thank you Channel 12 and Ms. Science!!!
Although, wizards are considered magical creators of fantasy, if you know Elizabeth, she had to find out for herself if wizards are truly real. At five years old, she is not only super duper awesome but she is also super duper curious! So, how does one find out an answer to such a question? Well, you ask a so-called wizard, right? And it just so happens, EBB has a little connection with getting in touch with a so-called Disney Wizard. EBB received a very magical phone call that she has REALLY been looking forward to for a long time! WOW! We knew it was coming we just didn’t know when. It could not have come at a better time. Elizabeth has been such a champ with all her chemotherapy this week. When I say champ, I mean it! She has had A LOT of medicine this week that has come in the form of sleepy medicine, spinal injections, lots a pokies in her port with chemo twice in the last 5 days, pill chemotherapy daily, in addition to all the other meds she is on for her inflamed stomach lining and her two mouth care rinses, three times a day. There are even more meds on the weekends. One thing about Elizabeth is that I never have to ask her twice to take her medicine, she doesn’t fuss, she doesn’t complain but those shots are really awful and really hurt her. The tears flow, and I feel terrible giving them to her. But the pain I experience in my heart having to give her those shots doesn’t compare to what she must live and experience each and every single day with this stupid cancer. She deserves all the magic in the world because she should not have to be kicking cancer in the buttcrack at five years old. No child should! Today was OH! OH! OH! It’s magic, Ya know. Daddy came home for lunch, with a sparklicious surprise! The phone rang and there on the other end was, a true television wizard, David Henrie!! Yep, that’s right, David Henrie, which many of you know as Justin from Disney’s, Wizards of Waverly Place called up Elizabeth today!!! DH is down with EBB! EBB was so ExCiTeD!!! She loves that show! She watches it all of the time with her brother and sister. David was so sweet and they spoke for quite some time.
After saying hello and introductions, EBB got down to business and asked him her first and most important question…
”Are you a real wizard?” She also wanted to know if he was going to the Nickelodeon Kids Choice awards and if he thought he would get slimed. He asked her a couple of questions as well like if she had a favorite character on the show? He also asked if she liked Justin Bieber? It completely made her day in the biggest way! So he did tell her that he is not a wizard in real life, just on the show, but David Henrie if you read this, I want you to know that you added super duper magic to a little girls life today that caused a super duper sparklicious smile bigger than I’ve ever seen. You helped her forget about cancer and taking medicines and shots, today. The fact that you took time out of your busy day to make this phone call to our beautiful daughter means the world to her and to us. It tells us how beautiful of a person you truly are. As you know, childhood cancer does not discriminate towards any family. It turns lives upside down. My husband and I really appreciate your beautiful heart. What you did for Elizabeth today was magicial and for that we believe, you, David Henrie, are definitely a true magical wizard! Thank you from deep within our hearts for calling today and thank you Linda Henrie for making it happen. It means more than you know.
You down with EBB?
Yeah, you know me!
Who’s down with EBB
David Henrie!!!
With super duper love,
The Blair’s
Brooke, Heidi, Bryce Kate and Elizabeth
Each day it’s the same flashback. We all walked into the house full of smiles on our faces. We just had a fun and delicious dinner at Pei Wei together. The kids all decided to make tons of soda bubbles as they mixed all the sodas together to create quite a drink that night. And it was quite a drink! I had bubbles myself that night with a nice cold beer, and it’s a good thing, too. I can tell you what table we sat at and where each one of us were seated. I can tell you that Elizabeth was wearing the cutest blue flowered headband holding her blond hair back away from her sparkling blue eyes. I remember sitting there discussing with Brooke, how anxious we were to get the results from Elizabeth’s biopsy. We sat and assured each other it would be nothing, but in my heart I knew it was. I didn’t take my phone to dinner that night. Probably for good reason, because we needed to enjoy that last dinner together before our lives would be turned so entirely upside down. The call I missed is a call I will never forget. As we walked into the house, I began instructing the kids to go and get ready for bed, but about mid-sentence, I looked down and saw that I missed a call from the doctor’s office at 7:10pm. It was now 7:27 and I stood there frozen starring at my phone. I remembered thinking, a phone call from your doctor at 7pm at night does not make for a good message. I then listened to the message, which asked us to call back as soon as we could. My hands started to tingle, my face went numb, my knees became weak and I tried to blink, but could not. As all three of my kids stood there starring at me in the kitchen, I handed the phone to Brooke to return the call. As he listened to the other end, my heart was in a panic, there was a lump in my throat the size of a grapefruit. My heart felt like it was going to literally beat straight through my chest. He kept repeating those words, Lymphoma or Leukemia, Lymphoma, or Leukemia, Lymphoma or Leukemia. He then fell to his knees in the middle of our kitchen floor, with his head not able to look up at me. As he finally, looked up with his eyes full of tears, he barely got the words to roll across his lips, “It’s cancer, Heidi. They are not sure at this point what kind, but they do know that it is either a Lymphoma or Leukemia. We need to take Elizabeth to Phoenix Children’s right now.” Brooke left for the hospital with Elizabeth. But, the most vivid part of this horrifying moment is the look that I saw in Elizabeth’s eyes as she turned to walk out the door that night with her daddy. The look in her eyes of being so scared, so terrified because she whole heartedly knew how scared her mama and dada were. I waited for the babysitter to arrive for Bryce and Kate. Pacing back and forth in the kitchen as I was crying, I looked up and saw Bryce and Kate crying too. I really wish everyday, that my children where not in the room that night to witness that phone call. As horrifying as it was, I can’t imagine how horrified as a child it must have been to see your parents breaking down, just completely losing it. It was the worst moment of our lives. Now, that moment haunts me daily. Every time I take a shower, it replays over and over in my head. Every time, I lay down at night in bed, it replays over and over in my head. It haunts me in my sleep and it haunts me as I walk through the day. I still get the lump in my throat and the rapid beating of my heart each time. It will be 7 months on Sunday, since that night when Elizabeth told her daddy on the way to the hospital that is was going to be okay and that she was ready to die. Haunting words forever. I can assure you that Elizabeth is not ready to die. She has too much to still do! She is going to take on this world in a way no one has ever seen. I will tell you, we are definitely doing much better today than we were on that night.
We are 7 months into kicking cancer in the buttcrack. Elizabeth did not make counts for her chemotherapy this week but next week watch out, she will once again kick it good! That chemo burns her from the inside to the out. It’s horrible poison. Normally her hands and bottoms of her feet get really dry and sore. I usually just rub lotion on them constantly, but it has gotten a little worse each treatment. She got bright red burns and blisters and sores between all of her fingers and behind her ears, last week. We had been fighting off fevers, as well, which we knew would land her in the hospital if they got too high. Luckily they never did and although the break this week has been nice, we are really looking forward to Monday when she will hopefully be able to start the second part of the 4th phase and then onto her maintence therapy for two years. Getting through the intense chemo will be a huge relief although we do still have a long road ahead of us. The doctors say that if you manage to stay in remission for 5 years, the cancer is most likely not coming back, however, there are possibilities of other cancers that can occur from the chemotherapies and radiation in the future, not to mention the fertility issues. I try not to go there and continue to think positive (my motto from the beginning, ya know).
On a lighter note, the kids have been on Spring Break this week and went on Channel 12 news with Ms. Science on Monday, which required us to get up and around at 4:00am to be at the station by 5am. It was super duper early, but the kids had super duper amounts of fun making 3D bubble blowers for National Bubble Week and being on TV! They LOVED that! It was our first outing in awhile. We have been living in our own bubble lately, not going out or doing much. We are trying to keep Elizabeth healthy during the bulk of cold and flu season, because with a very low ANC, getting a little cold can mean a hospital stay, which is unfortunately why we were not able to go to the run last weekend.
Although I have not posted on here, I have been extremely busy working on EBB Foundation “stuff” and I am looking forward to this new EBB project that I have been working so hard on, which I hope will spread beautiful bubbles about childhood cancer to many many super duper hearts. I feel I am slowly coming out of my grieving state of mind and I am trying to form a little bit of a routine again in our home. I feel like I can drive a car and actually concentrate on driving, where before that was not so easy of a task. I feel like I can take a bubble bath and feel like I am not sitting in a bathtub full of my own tears. Life is getting a little easier with everything, which is a really nice feeling. But, please never forget there are still children being diagnosed and dying everyday. So for them, bubble bath full of tears or not, I am committed to this cause for life. But you knew that.
The following are some up and coming ways you can help support EBB Foundation. Many thanks and super duper love to you all!
March & April:
Week night meals for The Blairs
A meal schedule on the website foodtidings.com has a calendar available to bring meals until Elizabeth’s treatment is finished. You can use this link to access their calendar-
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=f33245fb-7d89-4751-8fae-aa189a06170a
March 18th, Sunday:
Margaritas at Heidi’s House
The much anticipated launch of Ava Rose Designs Home Shows!
The first home show will be at the home of
Heidi Blair from 1-3pm
Stop by for margaritas and a chance to view and purchase the darling clothes!
50 West Marshall Ave
Phoenix, AZ 85013
A portion of the proceeds benefiting EBB Foundation
March 25th:
An Acoustic Evening with Jim Atkins
Jim Atkins along with Michelle Blades and Matt Thornton will be giving an acoustic performance at the
Cresent Ballroom, Phoenix 8:00pm
$12.00 – $15.00
21 and Over
Click on the link below to purchase tickets for this event.
Proceeds will benefit EBB Foundation!
March 31st, Saturday
LoziLu Women’s 5K Mud Run
What is it you ask??? A fabulously fun trail 5k filled with exhilarating obstacles and a party to continue the celebration while benefiting Leukemia & Lymphoma research and survivorship. Go to http://www.lozilu.com for more info on the event.
Who is WE?? Team GOT EBB???
We are running in honor of Elizabeth Brooklyn Blair, a beautiful five year old battling Stage IV Non-Hodgkin’s Lymphoma.
What is EBB?? It’s the movement inspired by Elizabeth Brooklyn Blair (EBB)! It’s more than wanting to kick cancer in the knee. It’s appreciating the simple pleasures of life. www.gotebb.com
SO, do YOU have EBB???
IF SO, please join us for a REALLY FUN time! We will be allowing Elizabeth to help plan our outfits and NOTHING is too sparkly or pinkalicious or rainbowey (love that word!) for her!
Here is what you need to sign up:
Go to http://www.lozilu.com
Team Name: GOT EBB???
Password: gotebb
Wave Time: Pick any time still available-they will make sure to put our entire team in the same wave time!
$59 provides you a super sweet stainless steel LoziLu water bottle, a stylish headband, fun, snacks, beverages, an adult beverage*, a LoziLu gym towel for your “salon treatment” (that’s a mud bath followed by a shower), bonding with the GFs, stickers, free event photos, and a DJ hosted party to shake your groove thang. LoziLu is kind of a sweet deal for all day entertainment.
We are a team of 40+ members!! We are attempting to win the award for Largest Team…Please pass it on to anyone and everyone you think would have a great time!
April 1st, Sunday
Vintage Style presents A Spring Chick Festival
Photos with live chicks, Glitter Easter Eggs EBB Style, and Make Slime with Ms. Science. Proceeds go to benefit the EBB Foundation
5202 N. 7th St., Phoenix 10-4
Call to make your photo reservations through INVU Portraits at 602-509-4945. Reservations not required, but recommended.
Got EBB? 
Written
on March 16, 2012