T-SWIZZLE YOUR WAY OVER
TO
KATE & ELIZABETH BLAIR’S HOUSE
FOR A SUPER DUPER EXCITING CHANCE
TO WIN
2 TICKETS TO TAYLOR SWIFT
ON 5/28 – THE RED TOUR – 16TH ROW!!!
&
ENJOY SOME SUPER DUPER SWIFTILICIOUS LEMONADE
WHERE – 305 W. ROSE LANE, PHOENIX
WHEN – SATURDAY, MAY 18TH
TIME – 9:00AM-12:00PM
ONLY A LIMITED AMOUNT OF TICKETS WILL BE SOLD ($10 EACH OR 3 FOR $25)
THE EBB CREW WILL BE ENJOYING IT RIGHT ALONG WITH YOU THAT NIGHT
AND WILL MAKE IT A NIGHT TO REMEMBER!
It was about a year ago when Elizabeth, Kate and myself attended an art workshop for the first time at the hospital. As you know, my girls take after me and LOVE to be artistic and create all things beautiful. Many times to get Elizabeth’s mind off of the cancer or let her take out her stress and anger, I would set up a canvas in the backyard and let her and her siblings go to town by getting more than messy and splatter painting all the colors of the rainbow. It was a MUCH needed release for all involved and seemed to help everyone in so many ways. There were always laughs and a sense of being free from reality even if for only a short time. But, before we knew it, we had tons of paintings and not enough wall space to hold them all. We decided donating the paintings to the hospital would be a great way to give back. And a great way it was!
This past weekend Elizabeth, Brooke and myself were invited by the Phoenix Children’s Hospital to attend their annual Beach Ball Gala. Of course we were super duper excited! I had to explain to Elizabeth that we were going to get dressed up really super duper fancy and eat a super duper fancy dinner. “Why?” She asked. “Well,” I said, “because it’s a way for the hospital to raise a lot of money for what they need to make children like you better.” She agreed she would go, but still concerned about missing out on all the fun her brother and sister would be having at a friends house that night. I agreed she could join them after the event and she was then fully on board with the idea. I also told her that her artwork would be used in more ways than one that night to help raise that money. Her eyes sparkled with joy. And off she went to the Beach Ball Gala looking like Cinderella dressed in her fanciest, frilliest, cream and GOLD dress.
We were walking around looking at all the fanciness and visiting with all her amazing doctors when all of a sudden we spotted a rainbow heart painted by none other than EBB herself! It was one of the many paintings she so passionately painted in the backyard to help kick cancer in the buttcrack. People soon realized she was the artist of this beautiful work of art and began taking photos with her and shaking her hand. She felt like an incredibly famous superstar! At one point I said to Elizabeth, “Do you feel like the next Taylor Swift?” Her response was, nope I feel like the first Elizabeth Brooklyn Blair.” And just like that her painting at the young age of six raised a whopping $660.00 to help benefit the Heart Center at Phoenix Children’s Hospital! Beauty truly does come from the heart! After the silent auction, we grabbed a couple of Shirley Temples and were whisked away into the ballroom for a private preview of Phoenix Children’s Hospitals new Super Hero Award. Artist of the award… you guessed it…Elizabeth Brooklyn Blair. First super hero to be receiving this award…the Mayor of Phoenix, Greg Stanton! After the award presentation, Elizabeth was asked if she would like to meet Mayor Stanton? She had heard this might happen and had been practicing her greeting upon meeting him throughout the day. She eventually decided on saying , “It’s nice to meet you Mr. Mayor.” He was very kind and took a photo with her as well as the President and CEO of Phoenix Children’s Hospital, Bob Meyer. I think we were introduced to a bunch of other important people, but it was all a dreamy blur at that point.
We eventually sat down for dinner and were in the company of the most amazing family! A family who has felt the suffering of watching their daughter struggle with life just like us. Cora, their 5 year old daughter, and Elizabeth immediately became friends! They listened to Taylor Swift on the ipod and had fun getting to know each other. Cora is 5 and a little over a year ago she had a heart transplant. This super strong family told their story that night and it touched me in a way I could not possibly describe. The father spoke about how they never prayed for a new heart, but always prayed for a cure because they knew by their daughter receiving a new heart it would mean another child would have to give their life. They carry so much guilt over this. The tears coming from her daddy’s eyes as he spoke these words were so very painful to watch. My eyes were opened in so many ways that night and I could not be more proud of Elizabeth and what her talents had helped do that night. The music soon began and Elizabeth was up and running to be front and center on stage! She had all 1000 guests following her dance moves on the dance floor.
Never a dull moment with that EBB I tell you! Eventually we managed to dragged her off the dance floor to head to her sleepover. On the way home she was asking when we were going to the next “Ball”? She kept saying how much fun she had “partying” and that she was not ready to stop. I asked her if she thought we should host a “Ball” of our own and she without hesitation said “YES!!!” I told the Phoenix Children’s Hospital Foundation we would like to help raise funds for them and asked what they needed money specifically for? They immediately replied “Camp Rainbow!” Ummmmm, if this isn’t a sign, I don’t know what is. It will most likely take place in late summer to early fall, right around when Elizabeth completes her treatment. I will keep everyone posted! If you read this and feel so inclined to help with this event, message me on facebook or email. Until then …keep on creating rainbows!
We heart you so much!
As Elizabeth finished her home schooling session on Friday, we decided to go and meet her daddy for lunch. As we were quickly climbing into the car, and about to buckle seatbelts, I heard Elizabeth say, “Ummm, Mama, is this supposed to happen?” As I glanced to the back of the car, there she sat holding a chunk of hair in her hand. What the what? STOP EVERYTHING! I think I may have blacked out for a moment, knowing it was hers, but in denial that it was not. I then said, “That’s not your hair, where did you get that? Elizabeth, did you cut your dolls hair again?” “No”, she said, as she ran her fingers through her hair with each time losing a little more. I don’t even remember what I said to her at that point, my head started spinning in disbelief that this was happening again. She has been on the same chemotherapy maintenance treatment since April. I don’t remember being warned by the doctors that this would happen. In fact, I have been telling her for months that this very thing would NOT happen. SOoooo Mama called the doctor and the doctor said…”Yes it’s possible that sweet girl could lose her hair again.” Yo ho ho, into the black hole I go. Hair loss is completely normal and can happen, not always, but can happen again during maintenance chemotherapy. Just another one of those super duper side effects. I called a sweet friend crying and not fully understanding why I was so upset. I kept saying “…It’s so stupid that I’m crying, it’s just hair…” I said over and over. This EBB (Exceptionally Beautiful Bestie) said, “It’s not stupid, it is about so much more than just the hair. This takes you back to a very painful place and that is why you are so upset.” She so nailed it on the head that one! I think everyone can relate to certain smells or songs that trigger certain memories. It’s nice when they are good, but it sucks when they are bad. And the memory of Elizabeth’s first hair loss was the first moment I really knew she was sick and truly understood what was happening to my baby. Her hair falling out took me back to that very painful time. The doctors tell me, it’s not uncommon for kiddos after treatment to actually vomit when they even just drive past the hospital. Just seeing the hospital triggers the horrific memories of what they have dealt with there. My emotions were spinning all day and as I had to give her nightly meds, I counted each pill for her as she swallowed, 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 – 11. I remember thinking how her reality is crazier than the thought of HELL itself? Elizabeth is supposed to not have a care in the world, but now she is screaming at me and everyone else she loves because the pills she takes cause total and utter madness, anxiety, heartbreak, vomiting, weakness and tremors. She is totally ticked off that she can’t run as fast as she used to and go to school everyday with the kids she started kindergarten with last year. Because, once, not even twice was enough, I guess. Three times she has to go through the heartbreak of losing her hair. And this doesn’t even scratch the surface of what she has been through. How every time she looks in the mirror at herself she is reminded with the scars, where she was poked with needles over and over and over again. It was like a sucker punch in the gut from cancer on Friday. And for the record, I probably shouldn’t post on FB in the middle of my insane, madness mental breakdowns again, and I am so sorry for any additional worry I caused anyone. Oh, the insanity of having a child fighting cancer. I will always worry, I will always be in fear of this monster. I can’t help but think that every ache and every pain cause me to immediately think, cancer.
We cannot be sure if she will lose all of her hair again or if it will just thin out? Really, as far as looks go it doesn’t matter. She ROCKS the bald look beautifully! And you know what I always say, “Beauty comes from within the heart.” And you all are so incredibly beautiful for being by our side every step of the way. Thank you thank you thank you!
With super duper love,
Heidi
IF YOU GIVE A STAR A RAINBOW, YOU ARE GOING TO NEED LOTS OF COLORFUL MARKERS AND PAPER TO MAKE IT. IF YOU HAVE LOTS OF MARKERS AND PAPER, YOU ARE GOING TO NEED AN ARTIST WITH CRAZY AMOUNTS OF TALENT AND INSPIRATION. IF THE ARTIST HAPPENS TO ANSWER TO THE NAME OF EBB AND IS ONE OF THE BRAVEST KIDDOS YOU KNOW THE OUTCOME WILL BE TRULY AMAZING. WHEN YOU SEE THE FINAL DRAWING YOUR HEART WILL START TO TWINKLE. WHEN YOUR HEART BEGINS TO TWINKLE, IT WILL SOON REMIND YOU OF THE NIGHT WHEN YOU WISHED UPON A STAR. THIS WISH WILL INSPIRE YOU TO DO SOMETHING SPECIAL WITH YOUR DRAWING. HELPING PHOENIX CHILDREN’S HOSPITAL WILL BE THE FIRST PLACE THAT COMES TO YOUR MIND. THIS WILL MAKE YOU SMILE BRIGHTER THAN THE SUN ITSELF AND FILL YOU UP FULL OF HAPPINESS. AS A RAINDROP SLIDES DOWN YOUR CHEEK, YOU WILL LOOK UP TO SPOT THE BRIGHTEST, HAPPIEST RAINBOW YOU HAVE EVER SEEN. THIS BRIGHT HAPPY RAINBOW WILL REMIND YOU OF YOUR SPECIAL RAINBOW STAR. AS YOU LOOK AT YOUR DRAWING YOU DECIDE TO ADD A WISH THAT READS…MAY YOUR SEASON BE BRIGHT AND FILLED WITH HAPPINESS. AND CHANCES ARE IF YOU HAVE A RAINBOW STAR WITH A SPECIAL WISH THEN PHOENIX CHILDREN’S HOSPITAL CAN RAISE A SUPER DUPER AMOUNT OF MONEY FOR A SUPER DUPER CAUSE LIKE CHILDHOOD CANCER!!!
It’s no secret that EBB is a BIG fan of Laura Numeroff. She is one of our favorite authors for children! You are never too little to make a difference. At the young age of six, that is exactly what Elizabeth is doing. You can order Elizabeth’s Rainbow Star in support of PCH Holiday Cards online at www.pchkidsart.org or they are also offered for sale in a variety pack at your local Safeway stores. So many thanks to everyone for your support past and present! PCH looks to raise over $150,000 with the holiday cards alone!!!
Bryce, Kate and Elizabeth all helped kick the sale off at one of our local Safeway Stores as they blasted Santa in a snowball fight last week! In tank tops and flip flops, it was a super duper rainbow star kind of day! SO much thanks to everyone for your support!
Elizabeth has been counting down the days. Not the days I would have ever expected to be counting down with my daughter. She was not counting down the days until Halloween or the days until Christmas, not even the days until her next birthday. She was, however, counting down the days until this small button under her skin that she refers to as “my a-port” was finally coming out. Not a typical countdown for a six year old, but as equally exciting for a child battling cancer or any other blood disorder who have received a port for that matter. It has been such a focus of her life. “Be careful, don’t bump your port.”, “Watch out for your port.”, Come and let me put cream on your port, Ok we are going to access your port.” “Port this and port that.” In many ways it has made her treatment much easier, but her flesh is scarred from needle after needle after needle. It’s through which she received her first chemotherapy, as well as the year of treatments week after week to follow. It’s through which she received her first blood transfusion and so so many more after that. It is her ultimate battle wound. It has become a part of who she is and will be forever.
Friday morning I dropped Bryce and Kate off at school. They were super duper excited for their sister! When I got home from dropping them off, my sleepy eyed Elizabeth had finally awoke. She was nervous, asking all sorts of questions. How do they get it out? Do they use a knife? What does the knife look like? Will I feel it? Will it hurt? Will I have sleepy medicine? Do I have to get a pokie? What color is my port? From there we started making bets on what color her tubie and port would be? Elizabeth and Daddy both guessed silver and gray with a clear tubie, my guess was purple everything, but only because I googled port surgery and watched a 6 minute video on You Tube so that I knew exactly what was going to be happening to my EBB. I watched in horror, covering my eyes leaving only a sliver of my fingers apart, just enough to be able to see what was happening. It was like I was watching a scary Halloween horror flick, but like my friend Sandra says, “as scary as Halloween can be, CANCER is so much more terrifying.” My kiddos sang it plenty of times and I will say it again…It is a terrifying nightmare!
So, it finally happened after months of speculation, Elizabeth finally had her port removed on Friday morning. She was so very nervous, but so excited at the same time. We all know how much of a brave kid she is and yes yet another awesome milestone for the record book! Before she went in, her surgeon Dr. Acosta came by to say hello. I said to Elizabeth, “Elizabeth meet your real life port fairy.” She looked at me the same way she looked at me over a year ago when I told her that beauty comes from her heart…She looked at me completely confused. I don’t know if she was more confused about his human form or the fact that he was well a HE. She then turned and smiled, as she posed for a picture and as he walked away she looked at me with her crazy bewildered look and said, “Is he a real life port fairy?”
According to Wikipedia “A Fairy” is described in modern culture as young, sometimes winged, humanoids of small stature, but they originally were depicted quite differently: tall, radiant, angelic beings, any magical creature, good folk, people of peace.
Absolutely, YES, he is a real life port fairy. He was tall, radiant, brought a little more peace to our life, and a good folk that was angelic in everyway who makes stainless steel ports appear in plastic bags.
Elizabeth went to bed with her “a-port” tonight, not as a little button under her skin, just above her ribs on her right side, but in a sealed plastic wrapper holding it tightly in her right hand. She refuses to leave it for the “other” port fairy to take. She is experiencing what most parents would describe as separation anxiety. It’s her baby and she is never letting it go. She is already planning for a show and tell. It was a super duper day! But the cherry on top was when Brooke received an amazing phone call as we got home from the hospital yesterday. It was Be the Match.
Be the Match is the registry that Brooke and I joined on Valentine’s Day last year. We took Elizabeth with us as she watched Brooke and I swabbed our cheeks to enter into the Bone Marrow Registry so that we could possibly save a life someday. Well, Brooke got a call yesterday that HE IS A MATCH and that someday is today for a 19 year old boy needing a life saving bone marrow transplant. As of now, those are the only details that we have. I have to be honest, there have been so many selfish moments over the last year that I have talked to God, gotten on my knees to him, begging and pleading to tell me why? Why us? Why our baby? Why any family? Why any child? Do you know what he keeps doing for us? Blessing us with the most amazing and most awesome blessings and people to help us every step of the way. We have already been so blessed beyond belief, but to receive the gift to save a life is absolutely glorious. God is good people! God is all so good! He did not bring this evil, but he is doing everything to help us through it.
If you would like to join the Be the Match registry, our friend McKindree is hosting a blood drive with swab kits available. It’s free and you can absolutely save a life. It’s important for you to know that it is literally 4 cotton swabs on your inner cheek. If you cannot make it to the blood drive, you can also send for a kit. Either way we encourage you to join.
With much love,
The Blair’s
I’m telling you, people. Everyday we wake up is another blessing. Follow your dreams and don’t let anyone stop you. Never say never.
-Justin Bieber
OH BABY Baby Baby Oh, we had such a great doctors appointment today! I am CATCHING FEELINGS that EBB is doing so much better these last couple of weeks and we could do jumping jacks ALL AROUND THE WORLD with our excitement. “Cancer, we will TAKE YOU down!” To make a long story short, Elizabeth has been fighting to get over a cold since April. Her body just did not have what it needed to fight it. At the same time she developed this cold, she also developed a tic (as in a sudden and uncontrollable movement in her head and neck, which she described as “having trouble breathing”) It progressively got worse over the summer and we were at a point where we needed to see a neurologist. After many specialists it was recommended that Elizabeth have what is called an IVIG infusion. An IVIG (Intravenous immunoglobulin) infusion is basically antibodies taken from the plasma of over one thousand blood donors and infused into her body. There are anaphylactic reactions or fever that can possibly occur, which made it scary, but we knew she would BE ALRIGHT and that we just needed to BELIEVE. She is the BEAUTY AND THE BEAT of our hearts and she continues to stand RIGHT HERE showing and proving to everyone her strength and determination! Her infusion went great and after a five month cold she is finally getting healthy and starting to feel better! Her tics are starting to subside and all just in time for…
Have you figured it out yet? JUSTIN BIEBER! Oh My Bieber Fever! How did Justin know to open his “Believe” Tour right here in Arizona with his number one fan, EBB? And during September of all months! September – Childhood Cancer Awareness Month! Goldalicious gold is the color to represent childhood cancer awareness. This month we have been sporting gold jewelry, gold nail polish, gold ribbons, gold shoes basically gold everything everyday. Guess who else likes to wear gold sneakers? You guessed it, Justin Bieber of course! The only difference is we have a designer look for a can of gold spray paint budget.
I wonder if he knows that we celebrated his 18th birthday this year with a yummy chocolate cake and 18% off all merchandise at my little bitty boutique that no longer exist because we are kicking childhood cancer in the buttcrack 24/7! I wonder if he knows our babysitter got a speeding ticket listening to BOYFRIEND on the radio driving home from California last month? I wonder if he knows even our dog, Rainbow, has Bieber Fever? I wonder if he knows he made a guest appearance at our house on super bowl Sunday this year or occasionally visits the hospital rooms of amazing children on the seventh floor at Phoenix Children’s Hospital? We don’t want to DIE IN YOUR ARMS Justin. We want to fight to save the lives of so many children holding onto hope with the help of your arms. The THOUGHT OF YOU makes us smile and all you do for these kids! On the seventh floor at PCH I once asked all the kiddos in the playroom including a little girl by the name of MARIA, what their Make-A-Wish would be? 99% of them said to meet Justin Bieber. From the moment Elizabeth was diagnosed with childhood cancer and feeling like SHE DON’T LIKE THE LIGHTS, she decided that she would only open her eyes for two things, spaghetti tacos and your video NEVER SAY NEVER. I wear that charm on my wrist everyday as a reminder to never give up on this fight. And as many times as we FALL, we will continue to pick ourselves back up because AS LONG AS YOU LOVE ME, you will give us strength to keep fighting. We may just be an OUT OF TOWN GIRL, to you but here in Phoenix, Arizona, we are most definitely your number one fans! We wrote a super duper song that combines our two passions, you and fighting childhood cancer. We hope it goes viral, we hope everyone shares it, we hope you love it and we really hope it spreads like crazy on this hook like a whirlwind.
Swaggie with love,
EBB
I know a really brave kid
I’ll never let them go
They can show you beauty
You ain’t never seen before
Baby, take a chance
Or you’ll never ever know
I got money in my hands
That I’d really like to blow
Give give give, to who?
Childhood cancer is the rende-vous
I don’t know why you wouldn’t
But I know why you should
So Say hello to a cure in
Three, two, swag
I’d like to be cancer free
Hey world, Let me talk to you
If we cure kids cancer
Children wouldn’t die
I could have my hair back
And kids wouldn’t say good-bye
I can be a brave kid
Anything you want
Let’s cure childhood cancer
and kick it in the butt
Let’s kick it in the butt
I’ll Tell you what it’s like yeah,
I’ll Tell you so you know
It’s a Terrifying nightmare
Being Pricked and probed
I don’t ever wanna die yeah,
You already know
Gold make you shine bright
Then you tie it in a bow
Hero Hero you could be my Hero
You could be my hero
Until the w-w-world ends
Make me dance
do a spin and A twirl and
Spread it like crazy
On this hook like a whirlwind
Swaggie
I’d like to be cancer free
Hey World, Let me talk to you
If we cure kids cancer
Children wouldn’t die
I could have my hair back
And we wouldn’t say good bye
I can be a brave kid
Anything you want
Let’s cure childhood cancer
And kick it in the butt
Let’s kick it in the butt
So give me a chance
Cause you’re all I need yeah
Help spread the word about childhood cancer
Just so you know
One in Five will Die
I just want you to love and treat me right
And Never let me go
It’s the biggest nightmare
Being pricked and probed
I can be a brave kid
Anything you want
Let’s cure childhood cancer
And kick it in the butt
Let’s kick it in the butt
Nananananana Hey World
nananana Let’s cure childhood cancer
Nanannanana Hey world
Nananana
Let’s cure childhood cancer!
It takes ten times as long to put yourself back together as it does to fall apart – Suzanne Collins, The Hunger Games
I’m not gonna lie, life has been hard. It’s been really really freakin’ hard. There are days I’m not sure if I can make it completely through without having a full on nervous breakdown. I may have had one today, a couple actually? But with all that keeps my heart broken, the pieces are slowly starting to come back together. Not the way they used to be, but back together in our new way. Our new childhood cancer way.
We have fallen apart in the last year in every single way you can possibly imagine. The autopilot has kept us going, but we are coming to a point where our brains are beginning to work again. We are starting to see that reflection in the mirror that we haven’t seen in a year. We are having to deal with feelings that have been put aside. We are now trying to put pieces back together and sort out how to move on with our lives. Maintenance has proved to be anything but easy for us. My sweet girl is getting her hair back, but it bothers her more now than it ever has before. We hear the whispers everywhere we go. ”Mommy, is that a boy or a girl?” Mommy, why does her hair look like that?” ”You’re son is so polite.” Why have I ignored the comments? Why can I not speak, when I hear them? It seems like a perfect opportunity to educate families about childhood cancer, right? I just can’t do it, I can’t say it aloud. I can’t say…”Well, little boy, HER name is Elizabeth and SHE has been fighting cancer. And SHE lost all of her hair not once but twice due to the medicine that we hope will make it all go away. It’s too hard to say out loud. It’s too hard to think this is my baby that we are talking about. I had to say it out loud this past Saturday at a Lymphoma and Leukemia team in training session. Standing in a circle of about 50 people, I was introduced as Elizabeth’s mom. Everywhere I looked were rainbow bracelets on the wrists of people that have never met her, but they were walking for her. Talk about honored! I was asked to speak briefly and as I began to open my mouth I felt the lump in my throat get bigger and bigger. As I began to speak I could hardly catch my breath and go on. Donnell our earth bound angel stepped in and again carried me through it. What would I do without her?
So how’s Elizabeth doing? Elizabeth is doing really well! The good news is, she had a second successful IV this week!!! This means the port can come out which will reduce the chance of blood infections. The only down fall is that she will have more pokies. It may be October by the time she is healed up and ready to swim, but by golly she’s going as soon as she can! Elizabeth is still on daily chemotherapies at home. We travel into the PCH clinic once every 28 days for chemo and start this vicious cycle over and over and over again. Elizabeth rotates on four different chemotherapy drugs every 28 days. Some of them she takes everyday, and others she takes once a week. The beginning of the 28 days is usually more difficult for her. This will last until next summer. August 23rd is our magic number if all goes according to plan. Unfortunately, I believe we are beginning to see the first of the side effects and we are only a year into it. Some mornings are bippity, boppity better than others. Some mornings Elizabeth wakes up ready for the day and off to the 2 1/2 hours of kindergarten she goes. Other days she tremors through the morning, needing assistance to even hold a glass of milk and on the sofa she lays. Our main concern is that Elizabeth has been struggling with what we believed to be a breathing issue, but we have recently come to realize that perhaps we are dealing with a neurological issue instead. Although we have not physically lost our daughter, we do still grieve the life we have lost for her. The cancer-free carefree lovely little life where she only had to worry about what outfit to put on Barbie, but instead she wants to make a video shaving Barbies head and show how Barbie has a port and methotrexate in a bag hanging on her IV pole. Elizabeth has started voice lessons and is truly a natural according to her teacher. Today was her first lesson and she can not wait to go back. Her legs are weak but she still tries to keep up with the other kids the best that she can. We are working on building those muscles and making them strong again, however, not a day goes by that Elizabeth doesn’t ask for her own wheelchair. Tonight Kate started ballet again. Elizabeth had to dress in her leotard too, just to take her.
I never imagined that my children would see and know the pain they have come to know in the last year. It has been a painful year. A year we will never ever forget. A year we conquered the biggest challenge life has thrown our way. We are just trying to live life with a heart that aches all of the time. I’m desperately trying to figure it all out in my own crazy kind of way.
Oh and P.S.
Cancer we are never ever ever getting back together!
Written
on December 9, 2012