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.
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.
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.
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!
I know Mother’s Day is a day about telling me how much you love me, but I just could not resist writing this letter tonight, to tell you how much I am the luckiest mommy in this super duper world because I have you. No words could possibly ever come close to how much I love you. Cancer has taken away so much in the last nine months, but little did we know it would give us so much more. I always knew that having more than one child would not ever divide the amount of love that exists within my heart, but only multiple it in a magnitude of ways I could have never known without each of you. Each one of you brings so much joy to my life in so many amazing ways.
Bryce, your brains are by far what I love to watch at work. The creative, confident you that continues to grow with so much strength and determination. 9 years ago you gave me the most important job I would ever exist to accomplish in my life and that job would be, Your Mommy. You constantly amaze me with the way you search for answers and never give up especially when it comes to making a convincing argument. You are so much like your Daddy. You know, I love that daddy of yours so much and to watch you grow up and be just like him, makes me smile brighter than the sun itself. You make me the proudest mama alive!
My sweet Kate, I see so much of me in you. If I could look to the future I know I would see all of my best qualities multiplied by 1,000% in a young lady who is so passionate about showing her love for others. Watching your heart love is an amazing gift that makes me so incredibly proud each and every single day. I love that you mimic my every move, my every thought and my every detail. It tells me how much I mean to you and how much of an impact I have on your precious life. I have always known you’ve had a heart of gold, Chickee, but over the last nine months, you have blossomed into a heart full of precious diamonds. When I look at you, I feel like what I am doing is right. Thank you for reminding me of that everyday.
Elizabeth, I knew from the minute you were born, you had a special purpose on this earth. I just wish it did not come in the way that it did. But here you are, making such an impact on this world of ours. I know this is only the beginning of the greatness you will accomplish in this lifetime. You have always been my easy-going, free-spirited love bug. And love bugs you do! You are the fanciest tom-girl anyone could know. I love to watch you explore and find all the nature qualities that exist within you. You are a natural born explorer, adventurer, changer of this world. The rules don’t apply to you and I love that you pay no attention to them. You love life and can light up a room within seconds. Keep fighting baby girl, and I will always be fighting right by your side.
Happy Mother’s Day to all of the LOVELIEST Mama’s I could ever possibly know!
On maintenance she is! Can I get a “SHE’S HUMMING FABULOUS!” She did it! She made counts with flying rainbow colors on Monday and how did she celebrate, you ask? 100% EBB Style! With a dance dare of course! For those of you who don’t watch The Ellen Show, a dance dare is when you go up to someone behind their back and start dancing without them knowing. If they turn around, you stop act like you’re not doing anything. E and I watch, Ellen, together almost everyday and her favorite part are the Dance Dares. We laugh and laugh! So E decided she was so humming fabulous, that she would pull a dance dare on her nurse, Monday at PCH (the video is below).
It was a great celebration as she got ready to go in for one more final chemotherapy treatment in her spine. Needless to say, Elizabeth is doing great. She had a little bit of an upset tummy today with fatique but I’m convinced it’s because we demolished a full Oreo ice cream cake to celebrate! Elizabeth will still continue with chemotherapy treatments at home on a daily basis for the next year and two months, however she will only need to go to the clinic for treatments once a month now instead of once-twice a week. There is a possibility of getting her port out within the next couple of months, unfortunately that mean no swimming for most of the summer. As some of you may know, my mom has been in town visiting. Tonight was super duper special because tonight, “Chickee”, Kate cut her hair. She has been talking about donating it to locks of love for quite some time and tonight she pulled it back in a ponytail and let her sister cut 11 inches of pure love off just for her! So Beautiful in So many ways! It’s been a great couple of days! Life is HUMMING Fabulous!
Rainbows and bracelets and snow cones Oh My! 😦 News, Elizabeth did not make counts Monday. The 🙂 news is… she finally has all the right cells, she just needs more of them. Soooo cheering for this coming Monday!
This weekend was an absolute blast! Elizabeth got to jam with Jim Atkins and they were absolutely A-MAZING together. If you were not able to make it to our local Farmers Market this past Saturday, not to make you feel bad but, you totally missed out! It was a highlight moment in my life for sure! I will try to get a video on here soon. A very special THANK YOU to Bo Mostow and her crew for putting it all together, all the vendors, Crossroads Church, Cross Roads Preschool, Jim Atkins and of course, our EBB (EveryBody Beautiful) dandy little Lions who continue to create beautiful rainbows each and every single day. We love you! YOU SO GOT EBB!
This part makes me giggle with excitement! A couple upcoming events this weekend…
Saturday, May 5th YARD SALE
Where: 50 W. Marshall Ave, Phoenix, AZ 85013
Furniture, Kitchen, OkaB Shoes, Antiques, Toys, Indiana Jones, GI Joe, Star Wars, Power Ranger, Jewelry, Lamps and so much more!
Elizabeth, Kate and Bryce will be selling snow cones, donuts and Big League Chew bubble gum.
Sunday, May 6th Mother’s Day Jewelry Making
A few months ago, I had a surprise waiting on my front door step. It was from a very special group of ladies who have a weekly Bible study group and are constantly doing amazing things for EBB. Well, they decided to make me the most beautiful, rainbowlicious bracelet I have ever seen! With each bead they said a prayer. It is one of my most favorite pieces and I wear it almost everyday! Jewelya is hosting this amazing EBB Mother’s Day Event! I am very excited that my own mom will be in town to enjoy the festivities! I can’t wait to see all the beautiful beading for all the beautiful mama’s in our community! See below for details…
philosophy: the natural aging process may cause our bodies to descend, but our spirit need not descend into worry. with time comes wisdom, character, strength, and perspective. our bodies are teaching us flexibility and glory of embracing change on our beautiful journey. we can fight against the flow, or we can yield to knowing our bodies, gaining our souls and finding our grace.