Methotrexate Shortage!

As Elizabeth and I got ready for clinic today we felt love in the air.  I love waking up next to her.  I love that I get to brush her hair again!  I love that she grabs my hand to hold at any chance she gets.  I love the feeling of her hand in mine even if it does tremor terribly today.  It is her hand.  It is her warm, soft, gentle, loving hand that I, her mama, get to hold all day if she will let me.  We walked into clinic today holding hands and sporting everything red and pink!  Elizabeth had her basket of puckered up lip lollipop treats ready to hand out.  As always she had a smile that would sparkle for miles and a personality that makes all the doctors and nurses giggle when they see her.  Just moments before the doctor walks in, Brooke glances over at the wall.  Hanging there (all over the clinic actually) is a notice to families.  THERE IS A METHOTREXATE SHORTAGE!  Our doctor walks in and confirms that they have about a three week supply of the chemotherapy drug, Methotrexate, but after that, they are not sure where it’s coming from and patients like the love of my life, Elizabeth Brooklyn Blair, will not have this drug available when she needs it in 6 weeks.  She will have to use a secondary drug that has proven to not be as effective.

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So I ask you, “How can this happen?”  This is so “humming” UNACCEPTABLE!  We are talking about life and “humming” death!  Does anyone care about these kids?  It is problems like this that I will never ever give up on this fight.  These kids deserve so much better!  They deserve the best, and what do they get in return?

13,500 children are diagnosed with cancer every year in the United States

1 in 5 children diagnosed with cancer will die.

Everyday, 46 school children will be diagnosed with cancer.

One in 300 boys will develop cancer before the age of 20.

One in 333 girls will develop cancer before the age of 20.

The incidence of invasive pediatric cancers is up to 29% in the past 20 years.

Pediatric cancer is the leading cause of death by disease among US children ages 1-14.

In 2009, only 4% of the National Cancer Institute’s budget was used for pediatric funding.

Young cancer patients often have a more advanced stage of cancer when first diagnosed.

The average age of death for a child with cancer is 8.

In 20 years the FDA has initially approved only one drug for any childhood cancer.  Half of all chemotherapies used for children’s cancers are 25 years old.

Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social acitivities and eventually work.

Changes need to happen and they need to happen NOW!  These are real children!  Real families!  REAL LIVES!  If you turn your head the other direction and think for a second your child is safe, think again.  The amount of children getting cancer is up.  Think about if this were your son or daughter fighting for their life and they do not have the drugs they need to treat it.  I can write all day about the problems in the world of childhood cancer until I’m blue in the face, but we need to Speak Now and inform others because if you don’t, how will you feel if the day comes (and I pray that it never does) when childhood cancer blindsides you like it did us.  So today, my purpose on here is to inform you about what is REAL.  I know.  I’m living this nightmare.  Elizabeth’s life and thousands of other children’s lives and the quality of their treatment will suffer because of it.  So I will continue to fight.  Elizabeth will continue to fight.  The two of us will hold each others hands the entire way.  It’s frightening on our own, but when you have the support behind you anything seems possible.

With love holding hands,

Elizabeth and her mama

A Beautiful Heart

Look at the lovely gift I had waiting at my front door this morning.  You are beautiful!   XOXOXOXOXOXOXO

Over the Rainbow

We are home from our clinic visit (yesterday)!  Elizabeth proved she still has what it takes to slay cancer!  Woody Wolfe was there singing and playing the guitar for the kids.  He has such a soothing voice.  He asked if there were any requests and of course, Elizabeth opened her eyes and immediately said “Over the Rainbow”.  Woody put his guitar away and quickly got out his ukulele for the song.  I quickly got out my phone and this is the treasure I captured…  Just after I finished recording this video a message came through from a very dear friend.  It said…”It was meant to be that our families reconnect – it’s from a higher spirit!  We are here to remind one another to breathe and to smile – the world is beautiful, my friend!”  Thank you Woody Wolfe and Missy Gaspard for reminding me, What a beautiful world we do indeed live.

Look what we got today

EBB is filling hearts with rainbows

Sending a very BIG RAINBOWLICIOUS THANK YOU to Erin Condren for these amazing Call Me Cards!!!  Check out her website http://www.erincondren.com.  She has amazing rainbowlicious products.  She even has a Cancer Awareness Section and donates a portion back to the charity of your choice.  SO AWESOME!!!!

Oh My Bieber!!

ARE YOU READY FOR SOME FOOTBALL?  Well, Elizabeth was super duper excited to have a special guest join our family for Super Duper Bowl Sunday.   It all started when I made a quick trip to the party store to pick up some fancy football plates and ended up coming home with a very special guest.  So who was the special guest?  Well, when I got home the girls were playing in the bathtub.  I went beep boopin’ into the bathroom with our special guest in one arm and my ipad in the other playing… “Me plus you, I’m a tell ya one time, me plus you, one time, one time, Girl when I met you my heart went knock knock, now those butterflies in my stomach won’t stop a stop…”  So did you guess it yet?  OMB!  YES!  The one the only the BIEBILICOUS… Justin Bieber!  The girls were freaking out!  Justin Bieber was in our house!  WHAT THE WHAT?  I can never get them out of the bathtub, but yesterday, who knew sparkles would fly so high and they would come jumping out in rainbow colors.  Normally, we would be primped and ready for such eye candy, but sometimes winging it is the best way.   It’s the EBB way!  So you are probably wondering what is Justiin Bieber like, right?  Well, what I can tell you is that he was extremely quiet.  In fact, he did not say a word!  He sang lots of songs like Baby Baby and Never Say Never.  They sounded just the same as they always do.  Perfect on the ipad.  I must say, I expected his skin to be very smooth and cozy like Kevin Jonas, however it was more like sandpaper, cardboard actually.  He was wearing red pants, so we assumed he was rooting for the Giants.  Bryce was pleased because he also was rooting for the Giants.  He had made a bet with his Papa earlier that day for $5 that the Giants would win, and now that the Giants have won, Bryce has yet another $5 dollars coming in the mail.  However, Bryce informed his Papa yesterday, that he prefers to be paid in 2 dollar bills, so I’ll have to let you know how that turns out.   He may just get an extra dollar out of it?  We also had JB assist Elizabeth in picking the winning ticket for the signed Arizona Cardinals Patrick Peterson football, which went straight to You Tube.  Congratulations are in order to Mike Kenison.  Mike Kenison is down with EBB!  When Brooke spoke with him yesterday, Mike told him that he wanted to give the football back to EBB!  So awesome!  A BIG Sparklicious THANK YOU needs to go out to my marvelous friend Missy for getting that fabulous football to raffle off for EBB and to everyone who bought and sold tickets!  Especially to MK for making an awesome TOUCHDOWN for EBB in the end!!  We were able to raise over $700.00 for EBB Foundation!  Breaking out in cheer now…Rah Rah Ree Kick Lymphoma in the Knee, Rah Rah Rass Kick Lymphoma in the Buttcrack!!!  Hurkie, Hurkie, Side C  (aka Kicking, Kicking Cancer)

Our Super Duper Bowl Guest

We have officially started Phase 4.  One day of steroids and they have already kicked into high gear.  Elizabeth’s request for breakfast was Spaghetti O’s.   And while she was waiting for the Spaghetti O’s she wanted PeaNut ButTer JellY PeaNut ButTer JellY….She is now eating and the freezer is stocked with frozen pizzas for the midnight cravings, which I’m sure are right around the corner.  So far, things are going so good.  She received chemo yesterday and will return on Thursday for more chemo and then Monday again.  We also received news that the 4^th Phase will be longer than we originally thought.  It will be about 2 months not counting delays.  Very low counts are anticipated and we are prepared for things to look yucky for a little while.  Brooke and I also decided to take Bryce and Kate to the clinic yesterday to see what Elizabeth does there.  They got to meet all of Elizabeth’s doctors and nurses.  Elizabeth also gave them the total tour of the PCH clinic but what they were most excited about was where to get those otter freezer pops she keeps telling them about!  Brooke and I want the kids to know that as Elizabeth will not be feeling well, it is all planned and to not worry.  These kiddos worry a lot these day.  It’s not something they should have to worry about, but it’s their baby sister and they do.  So the doctors said the hair we have been so excited about lately will start falling out again.  Elizabeth has been wearing her Dorothy wig when we leave the house, which is the first time I have seen her not want to show off her bald is beautiful look.  Either way we are really proud of her for handling everything like a rockstar!   Speaking of handling things like a rockstar, Elizabeth is doing an awesome job with the “YUCKY” medicine again.  Some of you may know, from early in Elizabeth’s treatment, she had to take “Yucky” medicine.  It was very much a challenge and eventually led to an NG Tube being placed.  I don’t believe that will be the case this time.  She is taking a heavier steroid, twice a day now, but she’s a pro at this and vanilla ice cream is saving the day!  She is doing awesome and so here we are once again, breathing in and letting go and praying all goes well.

I just want to take a moment to thank everyone for your continued support and tell you how much we appreciate all of you following Elizabeth’s updates and continuing to help kick cancer where it counts.  I really miss the comments that used to flow steadily on carepages.  The blog is no different, so contnue to read, continue to pray and continue to comment!

Much love,

EBB and crew

AND THE WINNER IS….

THE FOOTBALL RESULTS ARE IN…GO LIVE TO…

A BIG THANK YOU TO EVERYONE!  YOU’RE DOWN WITH EBB!!

Much love with a Cherry on Top,

CHOCOLATE COVERED CHERRIES!!!

Yes, that’s right things have been pretty sweetalicious with a super duper chocolate covered cherry on top around here!  This EBB movement is giving me chills!  How do I even describe to all of you how my heart feels right now.  Who would have known that the one phone call I could bring myself to make yesterday was going to lead to soooo much incredible sparkle and goodness today.  Because I will tell you, these days, for me making a phone call is quite difficult.  And yes, I know many of you would say it was difficult for me before all of this to pick up the phone and call.  And I would say you are absolutely right.  But, right now, I would describe myself as walking in and out of consciousness.  The shock of your five year old daughter getting cancer hits like a ton of bricks and then bricks randomly being thrown at random moments along the journey.  One minute I am ready to take on the world and schedule a meeting with the President so that he can look my daughter and the other thousands of kids in the eyes and tell them why there is so little funding to save her life.   The next minute, I feel like a Mama Bear in hybernation and want to never leave my bed.   Well, this morning was one of those mornings where I thought to myself, “If I cover my head long enough, maybe all of this cancer will just go away.   Nope, cancer is still very much happening.  It’s happening to more and more families every single day.  I WILL NOT WAIT.  I WILL MAKE A DIFFERENCE!  Cancer isn’t going to wait so why should I.  Kids are diagnosed every single day.  Kids die every single day.  I would never wait two years to try to make a difference when it comes to a child’s life.   Today, I made one phone call and it led to something really spectacular!  I can tell you that this one phone call that I made will help get EBB Foundation to reach super duper amounts of people.  It was very significant  in our little world.  It was a very generous donation from an anonymous donor and it truly has made me think about where all of this can go and the difference EBB can make.  Thank you for over-flowing my heart with rainbows, right now.  I’m seeing rainbows everywhere I look and this so makes my heart sparkle.   I am including the letter I asked to be passed along to this anonymous donor.  I thought you all would enjoy reading it.  If there is anything I can pass along to you today is… make that phone call, the one you have been putting off.  Whether it’s too say your sorry, share our story or tell someone that you love them.  It could change a lot of lives for the better.  

Dear Anonymous Donor,

My heart is full of flutters today as I received the most generous news.  We talk a lot about what makes a person beautiful around our house these days.  You are the perfect example of that beauty.

 This past August, our daughter, Elizabeth Brooklyn Blair, at the age of five, was diagnosed with Stage IV Non-Hodgkins Lymphoblastic Lymphoma.  This news, as you can imagine, was devastating to our family.  One minute we were living the “perfect dream” to the next minute living the “biggest nightmare.”  Elizabeth had a bad fall at preschool and hit her forehead.  The bruise did not seem to be going away.   Eventually, the bruise turned into three small lumps, which ultimately formed into a large tumor.  After a period of ten months of watching the area, x-rays, MRI and many doctor visits, a biopsy was done and confirmed that our youngest daughter had Stage IV, childhood cancer.  Not only was the cancer found on her head, but it had also spread to her bones and was found in both her upper and lower arms, upper and lower legs and both of her feet.  Elizabeth is now five months into her two and half years of treatment with some complications along the way, but we continue to pray and stay positive as a family.  The more my husband and I learn about is awful disease, the more of a difference we want to make for other families who will receive the same devastating news.  I started writing weekly updates on Elizabeth’s care for friends and family from the beginning.  These updates quickly turned into an amazing journal that is inspiring a lot of people to do a lot of beautiful things.  I have now transferred it to a blog site and have over 6000 hits in one month.  Our three children have raised over a thousand dollars themselves for childhood cancer.  As their mom, I could not be more proud!  My husband and I are in the process of starting a non-profit organization called, EBB Foundation.  We want EBB Foundation to “fill hearts with rainbows.”  As a parent dealing with this first hand, I cannot turn my back and do nothing, when pediatric cancer is the number one killer by disease in children.

 I will say, I have never witnessed more beauty in my life than I have in the past five months.  Our community has come together and delivered dinners nightly, fundraised to help with additional expenses, and sent so many lovely cards and letters, which touch my heart daily.  And then there is you.  Someone anonymously donating to help a family you have never met.  This gesture sparkles with such love and beauty and I thank you from the dearest place in my heart for listening to our story, for touching our lives and mostly for being beautiful.

With much love,

The Blair’s

Brooke, Heidi, Bryce, Kate and Elizabeth

If You Give Cancer a Cupcake

If you give cancer a cupcake, you are going to need lots of lemonade to go with it.  If you have cupcakes and lemonade, you are going to need some napkins and cups, as well.  Friends will start to tell friends, and a lovely little line will form in the front yard.   If a lovely little line forms, your heart will start to flutter.  When your heart begins to flutter, it will remind you of the day you spent catching butterflies with your children.  This memory will bring a smile to your face.  Just then you will see a butterfly pass over the cupcakes.  Sporting a big smile, you’ll begin to pass them out one by one.   When you pass out the cupcakes one by one, they will be so good, you will have to start passing them out two by two.  As lovely people continue to get in line for this sweetalicious art, they will say how delicious and beautiful they are.  As you take a bite of these beautiful cupcakes it will remind you how beauty comes from the sweetest place in your heart.  And chances are if beauty comes from the sweetest place in your heart, cancer doesn’t stand a chance.  GOT EBB?   

We are home and Elizabeth is moving on into Phase 4!!!!  Inpatient complete and a huge relief in my mind.  She kicked Lymphoma in the knee one more time, this week!  This week has been amazing in so many ways.  A week full of love and joy, hope and light.  This was a week I so desperately needed.  This great big city which so many of us all live, proved to be an amazing, comforting community that I am so proud to be a part of.  We have received so many wonderful and unexpected surprises from as far as Japan!  We have received care packages from strangers.  I have gotten such unforgettable messages from old high school friends I haven’t spoke to since high school.   People everywhere telling me about how Elizabeth’s story is touching and changing their lives.  People raising rainbowlicious amounts of money for a cause that I will never stop fighting for.  I have had beautiful people shed tears for my daughter and tell me they too would do anything to make all of this cancer go away.  I have seen the stars align this week and make some pretty spectacular things happen because there are lots of people starting to get down with EBB.  Yeah, you know me, I’m getting really excited!  You know who’s down with EBB?

Jenny Meyerson and her family are down with EBB!  With Jenny’s permission I would love to share her blog post below.  Jenny is a super duper talented mom and super duper brave cancer survivor.  She has created a life list of things she wants to do.  One of which is, host a cupcake and lemonade stand with the kids.  She was able to mark that off her list this week, but she has said she would like to do it annually.  Many of you have been asking how you can help and be down with EBB.  If you are looking for a great idea, read Jenny’s post.  She walks you through everything you need and with great success!  This little cupcake sale she and her family did raised $1100.00!!  She and her family donated 100% of it to EBB today!!  We would love for you to post all the ways EBB is making a difference in your community!

 http://www.jennymeyerson.com/uncategorized/39-list-host-a-cupcake-lemonade-stand-with-the-kids/

This is my favorite picture she took.  It’s so EBB!  Jenny was apparently dressed in all black, however it appeared she was dressed in all white.  LOVE IT!!!

Cards Football

Your chance to own a…

PATRICK PETERSON ROOKIE AUTOGRAPHED COLLECTORS FOOTBALL

This football was issued and authenticated by your Arizona Cardinals.

Peterson gave Cardinal fans a reason to watch 2011 with his razzle and dazzle style capped by a sparklicious 99yd punt return.

CAN YOU SAY EBB!!!

Patrick Peterson #21

#5 overall pick 2011

4 TD punt returns in a season

*tied NFL record (4 other individuals)

*tied NFL rookie record (1 other individual set in 1951)

699 punt return yards

*NFL 2011 leader

“Humming” Fabulous

When Elizabeth was just months old she would hum herself to sleep at naptime. I would turn on the baby monitor and listen everyday as I would put her down for her lovely little nap. Her favorite song to hum herself to sleep, none other than “Fabulous” by Sharpay Evans from the movie, High School Musical. That’s right, I kid you not, at six months old Elizabeth was humming Fabulous to sleep. How did she know at 6 months of age how “humming” fabulous she truly was? I knew she was “humming” fabulous from the minute she was born. In fact, I knew from the minute she was conceived. And honest to God, I loved every minute of being pregnant with her, even if I did gain 50lbs and my shoes didn’t fit. But, when she was born I loved her even more. I loved giving her baths. I loved rocking her. I loved feeding her. I loved holding her. I loved kissing her. I loved every single sweetalicious thing and moment with her. She never was the baby that cried. Only smiles and giggles and giggles and smiles. But even if she did cry, I would have loved that, too. Everyday. Every minute. She never, ever fussed, never complained. She was sweetness inside and out. She was so independent and content with anything and everything. I have always known how “humming” lucky I am for the life that I have. I did not think I could fall anymore in love with this child, because as a mother your heart is always full of love for your children. But when you lay in a hospital bed day after day with your five year old daughter who is fighting for her life, something about that love explodes. It magnifies a million times and then a million times more. When you have no choice but to sit and watch “humming” poison enter into her little bitty body that clearly is marked TOXIC, it makes a mommy sick. It makes a mommy weak at the knees. It makes this mommy cry because in order to make her better now we have to use “humming” poison. That poison may save her life now, but may cause other cancers down the road. She is “humming” fabulous and does not deserve any of this. Why does this happen to children? No one knows and especially not the “humming” American Cancer Society, which by the way donates less than 1% towards childhood cancer. So if you are looking to donate and make a difference for childhood cancer, The American Cancer Society would most definitely NOT BE THE PLACE TO DONATE! It’s “humming” buttcracks like Andrew “humming” Becker that childhood cancer is not funded enough, not researched enough and definitely not aware to people enough. The night sweats have started again and my dreams at night are much less than magical. And this nightmare, which I keep praying I will wake up from, continues to get more and more “humming” real. The reality is, we are home from the hospital and will return on Monday for more “humming” poison. Elizabeth has one more treatment in Phase 3 and then we move into the 4th and final phase before Elizabeth’s two year maintenance therapy begins. We are estimating another two months. I’m really scared and have moments of panic, but Elizabeth can do this. She can do this more than anyone I know because she’s “humming” faaabulouuuus. We have been warned, the final phase, they “hit” them extremely hard and will probably be the “humming” ugliest. Absolutely, no doubts, she can do it. Not that she should have to but she has no choice because guess why? Cancer DOES NOT play favorites. I am here to tell you that this “humming” childhood cancer can happen to anyone’s child. If it happened to us it can happen to anyone. Cancer is anything but rainbows and sparkles. Cancer is definitely not what I ever dreamed for my beautiful five year old daughter. No one does. Although we paint rainbows everyday, cancer is far from it. It is our way of helping Elizabeth deal with such horror and hell. I will do anything I possibly can for my little rainbowlicious to not think about cancer. She knows kids die from cancer. She knows she has cancer. She is five and super duper smart! Rainbows and sparkles help but they don’t erase the pain and suffering that Elizabeth has and continues to experience mentally and physically and no doubt will never, ever forget. Her memories from five should be letter people and music class in kindergarten, NOT “HUMMING” CANCER! Elizabeth is extraordinary and she is going to do so many good things with all of this. She already “humming” is! Did everyone see Miss Elizabeth Hollywood on her Fox 10 interview? Well, doing an interview on Fox 10 about how much she loves Barbie was not enough for Elizabeth. She wanted to support the Beautiful and Bald Barbie Movement in a much much bigger way. And so she did, with an amazing mini movie webcast. If you have not seen it, you should. And you should forward it to everyone you know, so they can see how beauty truly does come from the heart. Go to http://www.gotebb.com or http://www.youtube.com search Beautiful And Bald Barbie Elizabeth. We love watching it around here and think she will only continue to make more of a difference in the world of childhood cancer. You know who else is making a big difference in the lives of children with childhood cancer and blood disorders, Miss Arizona, Jennifer Sedler. Yes, that’s right, Elizabeth’s friend Miss Arizona has chosen hemotology/oncology not only as her major in college, but also her platform for her year reining as Miss Arizona! She just competed in the Miss America pageant in Las Vegas this past Saturday. And can I just say, I thought for sure she was the winner and quite frankly, she is the winner in my book, choosing a platform as great as childhood cancer. We need more celebrity voices speaking out about childhood cancer. Maybe we can get “humming” people to hear that children are dying everyday from this “humming” awful awful disease. Making the Beautiful and Bald Barbie should not have to be a movement, it should just be. But instead, we must beg and plea for it to happen. Jennifer Sedler, you are amazing and Elizabeth and I thank you for not looking the other way to childhood cancer. So anyways, if you watched the Miss America Pageant Saturday, you would know that Miss Arizona did our state very “humming” proud and was 3rd runner up! Elizabeth was so excited about meeting her at the local trunk show about a month ago, that she wanted to have a party the night of the pageant. A party she wants, a party she gets! We invited Elizabeth’s friends McKindree, Hattie and their mom Aimee over for the party. We had a “humming” great time. We met Aimee, McKindree and Hattie at the Hope Kids Event when we met Miss Jenilicous. They are a beautiful family and we love spending time with them! And of course, Kate, Elizabeth and I sent the boys away for the night so only us girls could sparkle posters, model sashes, and act crazy in our crowns. We crunched on candy, cupcakes and pizza and not to mention SCREAMED a lot, especially when Miss Arizona continued to advance! Actually the EBB in me wanted to take a last minute road trip to Las Vegas to see the show in person, however, by the time it crossed my mind we would have come up an hour too short. It was a “humming” blast! Speaking of a blast, Elizabeth said to me on Sunday as Bryce was at his airsoft gun shooting party, “I bet Bryce is having a blast at his birthday party. Get it mom, (a blast).” As she motioned with her fingers like she was quoting someone. “Hum” I wonder where she gets that from? But, we all know that’s my Elizabeth still cracking jokes. So it was one party to the next this weekend with Bryce’s birthday. My big boy is 9 years old and I left all the birthday plans up to Brooke this year. -BIG PAUSE- It was Bryce’s best birthday ever. Crazy I know! I’m like the “humming” ultimate party planner. And as Brooke and I layed in bed the night before the party he said, I didn’t get a cake yet oh and by the way should I feed the boys lunch? I laughed and went to sleep, however, I then awoke a short time later from night sweats. I’m pretty sure I know why and it’s not because of a birthday cake ya’ll. Moral of this short little story, let go and don’t sweat the small stuff. And yes, EBB was right, Bryce had a “humming” blast! I have so many other things that have happened that I want to share with you, but I am going to “humming” bed for the night.