Elizabeth Brooklyn Blair

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

www.avarosedesigns.com

 

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.

http://tinyurl.com/6tocoh2

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.

Comments on: "Each day it’s…" (4)

  1. Wendy christensen said:

    I’ll never forget standing out front the next morning. It makes me literally weak to think of that day and all that your family had gone thru since then. I have such vivid images of Elizabeth dressed up as a Disney princess and plastic heels clicking across the wood floors : ) She has such a big personality!
    Thanks for posting her progress. tell all the kiddos hi 🙂
    As always – we are all praying for all of you.
    Wendy, Richard, Jules, Issy & Christian

  2. My heart hurts, reading this. While our story is different, there is just no way to describe the shock, terror and sadness experienced when you hear the words, “Your child has cancer”. Every time I hear a helicopter bringing a patient to PCH I am brought to my knees with the memory of that night with Nate being airlifted from Scottsdale. It is amazing that as much as we’ve had to watch our children suffer since then…somehow it becomes almost a way of life, not one I will EVER accept, but easier somehow. So much easier than that first night. I often wonder if the pain from that memory will ever fade. Maybe not, maybe it will keep a fire under us to continue to fight for all the kids. Thanks for sharing your story, I haven’t been able to bring myself to write ours down yet. xoxo

    • Beth I made the same comment to a friend tonight. Perhaps we are supposed to never forget that feeling for a reason. It keeps me driven to want to never ever give up making a difference for these precious little lives. As much as that memory haunts me, doing nothing would haunt me more. I read about Nate tonight, another infection in the line! Praying it is all resolved and treated quickly and that you will be able to make that doctor’s appointment for the radiation. I loved seeing the picture of Nate at home in his own bed a short time ago. Nothing like home sweet home.

  3. Suzanne Daly said:

    Somehow I missed this post when you wrote it on March 16th. Wish I hadn’t because I would have sent this note right then! It hurts my heart to read what you went through that first night because obviously this is a parent’s biggest fear and nightmare. I admire you so much Heidi, that you are determined to not let this be in vain, and that no matter what, it is now your calling. I think about you guys every day (many times in each day) and I wish I had a million bucks to give to EBB foundation to further your goals. I was really banking on that lottery on Friday night, lol! Oh well, my prayers will have to do for now, but they can be pretty darn powerful, you know? You all are incredible, beautiful, important, and are making a difference for children with cancer. I just looked down at my shirt and I am wearing the Race for the Cure t-shirt that we wore when we did the walk together many years ago! See, you were even making a difference back then. Love you.

    Suzanne

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