Got EBB?

ReMix – Down with EBB?

It all started a couple of weeks ago with a new lump, which we noticed that formed on Elizabeth’s head just above her original tumor.  The doctor’s were not overly concerned, however, Brooke and I panic at even the thought of her cancer coming out of remission, especially before intense treatment is complete.  It’s very unlikely for this to happen right now, however we were told it’s not impossible.   I had not mentioned it on here, but deep inside Brooke and I have been really stressing about it.  The doctors thought maybe from steroids, maybe skull resculpting or that it possibly felt like soft tissue?  We had been keeping an eye on things and when she got off some of the chemo, we were scheduled for a CT Scan of the area in a couple of weeks to put everyone’s mind at ease.    Well, as you know, yesterday was Monday, and we were at clinic for Elizabeth’s weekly chemotherapy.  I must say it has been a very difficult week for Elizabeth.   The toughest in a long time, actually.  It has been anything but easy peasy lemon squeezy for her.  Although her tummy aches constantly and sliding into first and feeling a sudden burst hit every now and then, she is really hanging in there.  For weeks she has really been enjoying her food, however, eating is causing her lots of terrible pain these days.  She was up most of last night and very uncomfortable for most of it.  She does not feel much like getting out of bed or opening her eyes.  She can not stand for longer than a couple of minutes.  The doctors thought she looked very pale, and were shocked when her counts came back really good.  After a very restless night, I called the clinic this morning and the next thing I know we are doing an emergency CT Scan of her abdomen. They decided to do the scan of her head as well, today!

Well, today Brooke and I cried the happiest tears we have cried in a very long time, actually the happiest tears I have ever cried in my entire life.  The results showed no sign of cancer in either her head or her abdomen.  I seriously broke down at the news.  And we did find out what is causing Elizabeth so much pain.  It is something called, Gastritis.  The lining of her stomach is severely inflamed and if not caught could have cause a hole in her stomach.  Another wonderful side effect of chemotherapy.  She had been taking meds with her steroids to prevent this, but for some kiddos it’s just not enough.  Elizabeth is one of those kids.  She received some fluids, and some stronger meds and hopefully she will be feeling brand new compared to today in no time.   She already walked to the bathroom tonight and is up out of bed for the first time in a week!

Elizabeth accomplished several milestones this week.  Not only is she done taking her steroids!  Yippy!   But also, had a visit from the tooth fairy, as well.  After six long months of wiggling this very stubborn tooth, it finally came out!  Daddy pulled it out a few nights ago!  Because Elizabeth has not been walking much these days, big sister, Kate insisted that she would run and get the special “tooth fairy pillow” and Elizabeth insisted that she call her brother at a friends house to tell him the good news.  I sat there on the bed and took it all in as I watched so many memories being made.  I witnessed a true trust between a daddy and his daughter.  I witnessed a true love between three super duper siblings.  It’s a true love with a bond that will never be broken no matter how much they fight at times.  I witnessed absolute joy and happiness in the best way possible last night.  Elizabeth, who is sleeping in our bed again, put that tooth under her pillow, made a wish that the tooth fairy would let her keep her tooth and off to never never land we all went to sleep.  It was about 3:00am when Elizabeth awoke to quickly check beneath her pillow for a visit from the tooth fairy.  She immediately said, “Nope she didn’t come yet.” And she and I tossed and turned for the next hour and a half.  “Mama, are you sleeping?” she asked.  Needless to say I was not and by 4:30 she had eventually dozed back into her cozy little night sleep.  By morning light, the tooth fairy had made her way underneath Elizabeth’s pillow.  She granted Elizabeth’s wish and left her tooth along with a trail of fairy dust and five big buckaroos!  Elizabeth had hoped I could sneak a picture of the tooth fairy, but I too eventually fell asleep and yet another photo opportunity I missed.  The final milestone this week for Elizabeth is that she started losing her hair again.  She is feeling too bad everywhere else to even really care, but we knew it was going to happen and it started this week.  So, Elizabeth is also scheduled to participate in a fashion show this Sunday if she is feeling up for it.  Several pet therapy dogs from the hospital and her friend Zoe are going to be in the fashion show, as well.  This all might be just enough motivation to get her up and moving out of bed.  We are continuing to be strong for each other and pray everyday for God to keep Elizabeth well.  We ask that you please do the same. Thank you to everyone for your continued support through the most difficult time in our lives.  At times we feel like we cannot continue and wonder how in the world Elizabeth can endure all that she does at five years of age.  But, some special friends once told me “I can do hard things.”  And you know what, they were so incredibly right.  I believe in our family and I believe in our strength together as a family united and I believe WE CAN DO HARD THINGS!  No matter how hard, we can do it.   We will continue to get through this.  Thanks Kin and Aimee!  And thank you Katie Chester for sharing your experience as an older sister and helping us celebrate tonight in true rainbowlicious EBB style.   We put candles on that cake tonight and sang around the dinner table “You down with EBB?  Yay, you know me!  Who’s down with EBB?  All our family!”  Which reminds me…We, the Blair’s, (and I mean all of us) are writing some new lyrics from OPP to EBB…I hope you all go to bed singing it tonight…

 http://www.youtube.com/watch?v=qmuFlaFYdgE

2012 – Army with Harmony

Kickin’ Cancer Now

Kickin’ Cancer Now

Kickin’ Cancer Now

E sidekick, slay it now

EBB, how can I explain it

I’ll take you frame by frame it

To have y’all jumpin’, shall we singin’ it

E is for Every, B is for Body fightin’ cancer

The last B, well… look to yourself for the answer

You ever had a brother, sister, mother, father, best of friend

You get the worst of news about your daughter, son that makes your head wanna spin

You get home, wait a day, it’s what you wanna know about

Then you stand up, speak out, and it’s a movement that you scream and shout

It’s not a front, F to the R to the O to the N to the T

It’s just a rainbow chemotherapy

It’s EBB, time other people’s what you get it

There’s no room for cancer, there’s just room to slay it

How many people out there know just what I’m gettin’ at

Who thinks it’s wrong ‘cos they say enough kids ain’t gettin’ it

Just too little funds for these little peeps to be kickin’ it

Well if you do, that’s EBB and you are down with it

So if you want, here’s your membership

Chorus:

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (Every last mommy)

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (All the family)

As for the kids that lost their battle, EBB means something fearless

The first two letters are the same but the last is something different

It’s the heroic, courageous, strongest – Its fight the longest

It’s a seven letter word rhymin’ with gravely

I won’t get into that, I’ll do it…ah…sorta bravely

I say the last B…hmmm…stands for bravery

Now ya all here comes a rainbow, send a rainbow back to me, now tell me exactly

Have you ever known a boy or girl who had a battle for their life

How about an aunt or uncle, husband or even a wife.

Well, if you do then you know what I’m getting’ at

Now don’t be shocked ‘cos if you’re down I want your hands up high

Say EBB (EBB) I like to say with pride

Now when you do it, do it well and make sure that it counts

You’re now down with the cause that counts

Chorus:

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (This whole party)

You down with EBB (Yeah you know me) 3X

Who’s down with EBB (This whole party)

Run Mama Run!

I sat for the first time in awhile to do homework with the kids last week.  This task felt completely foreign to me.  I felt like a new parent trying to figure everything out again.  I felt like I followed Silly Sally to town walking backwards upside down and I was left feeling dazed and confused.  I’m not sure I’m quite ready to take on all this responsibility of third grade math and second grade spelling.  Isn’t the responsibility of getting my daughter through cancer enough responsibility in a day?  On top of childhood cancer, I have been struggling with what to do with my boutique, Vintage Style.  Even though I most of the time feel frozen, life does still continue to go on.

I have been trying to lease out my boutique space for a couple of months and I have come up with nothing.  Many are interested, but no one is interested enough to take over the responsibility of paying the rent.  As you may know, Vintage Style is a small boutique I was planning to open before Elizabeth was diagnosed with cancer.   Actually, the grand opening was scheduled the same week.  This had been a dream of mine since early on while attending design school.  Last year, I found a space, signed a lease, hired marketing, crafted all the things I love and put everything into this little shop, which I called Vintage Style.  I was so excited to be going back to work, doing all things that I love. Brooke and the kids were extremely excited and proud of me.  I could see it in their eyes.  I was being the role model to my family that I always wanted to be.  A strong, powerful working Mama!  So now, here I am…a much, much different woman.  Different things are important now.  Helping Elizabeth kick cancer in the buttcrack, that is my number one everyday most important task.  No matter what happens, that will never change.  But, I will say I feel a little less strong and powerful of Mama these days.  If I cannot handle all of the other responsibilities with my family at home, how am I supposed to wrap my head around running a business?  Thank goodness for my super duper helpful husband who picks up so much of my super duper slack these days.  I struggle with the fact that he has believed in my dreams so much (more than I think I believed in them myself) and all I can deliver are tears and regret for making him believe in me so much.   He works all day, sometimes in the middle of the nights, he comes home, does laundry, coaches baseball and still manages to fit in a run every now and then.  Running was our thing together before all of this evil.  Sunday mornings were our date”day”.  We would run the bridal path, making each other laugh, racing to the finish (I did win once) and then breakfast.  I ran for the first time in six months the other day (Elizabeth made me) and that too felt foreign to me.   Everything about our life is different.  EVERYTHING!  So the bottom line is this, I’m in a lease, with a store ready to go, but my brain and heart will not let me run it the way it stands.  So what do I do?  Can someone please just tell me so my brain can stay on autopilot and I will just continue to walk around in this daze.  I don’t enjoy being like this.  I have always been so organized, so on top of tasks, so put together with life, but ever since the doctor spoke those words, “Your daughter has cancer.” I’m just a super duper Silly Sally treading in a sea of guilt no matter what I do.   Cleaning the house and opening this store do not matter.  My daughter surviving cancer – that is what matters.  Loving each other – that is what matters.  Being a kind person – that is what matters.  I feel sorry for people who have different priorities that matter.  I feel sorry for the mama’s that feel the need to talk about other mama’s trying to do good for their community.  I have been blessed to open my eyes to what is truly important in life and live life for the things that truly matter and not feel the need to impress or keep up with anyone.  I feel really lucky to not only got EBB but also to be down with EBB.  BTW, if anyone ever has a connection and can get Naughty by Nature to rewrite and sing their song with EBB Lyrics, I would forever be in debt to you!  With that said, this brings me to the EBB Foundation.  You all know it.  It’s this awesome little Foundation that has been inspired by Elizabeth Brooklyn Blair, to help bring more awareness to childhood cancer and inspire families to enjoy the simple pleasures of life together.  It is the one thing that makes me feel a little stronger these days about making a real difference in the world besides raises three beautiful children that are doing the same thing. 

I live and breathe everything childhood cancer these days.  It is constantly on my mind.  I feel like fighting childhood cancer is my purpose in life.  It’s my purpose forever.  It has to be.  So here it goes…Do you think if I open Vintage Style with the proceeds benefiting EBB Foundation this will awaken my brain and allow my heart to fill with rainbows?  Just as I am writing this, I feel a sparks fly inside of me.  Brain working or not, this is the plan!  Elizabeth, Kate and Bryce think the idea is so EBB!  Elizabeth wants to help me run it!  She would definitely add some spice to it!  I’m sure she would redecorate in rainbow colors, but would compromise for her mama if I insist they were all pastels.  Maybe that’s the answer, open Vintage Style as an everyday fundraiser for EBB Foundation.  Proceeds of the store go towards Elizabeth’s Foundation to help create awareness for childhood cancer and raise money for research.  I am thinking this could be the answer.  So for now this is the plan, Imma be opening, Vintage Style, which will benefit EBB Foundation.  We will open its doors starting on Tuesday, February 21th!  Come By, Say Hi, and Help Kick Cancer Bye Bye!

Vintage Style Benefiting EBB Foundation

5202 N. 7^th St.

Phoenix, AZ 85014

(Located on the West side of 7^th Street next to Floral Keepsakes)

Hours of Operation

Monday – Saturday

10:00-5:00

Ms. Donnell will be helping me run things over there.  For those of you who do not know Ms. Donnell, she came into our lives and blessed our family just days before Elizabeth was diagnosed.  She has been a blessing everyday since.  Ms. Donnell is a cancer survivor and has helped me deal with a lot of “humming crap” that cancer brings along with it.  She helps us completely out of the kindness of her heart.  She loves our family and we love her!  Ms. Donnell has offered to volunteer her time at Vintage Style.  That’s right, volunteering a super duper amount of time to help our family.  I cannot think of a more EBB gesture!  Thank you Ms. Donnell.  You so GOT EBB!  You fill our hearts with rainbows, daily.

So there you have it!  As Elizabeth would say…”Run Mama Run”  So that’s exactly what we are going to do.

Creating rainbows

Team EBB

Just Rollin’ Along

So for Valentine’s Day, Brooke, Elizabeth and myself all went over to Chamberlain College to join the Bone Marrow Registry.  It was so easy!  Something I may not have been clear about before, is that IT IS FREE to join the registry!  They do accept donations because there is a cost associated with adding new donors of about $100.00, but it is not required in anyway.  We met Aubrie, who is not only one of the local representatives for Be The Match, but also a nine year survivor of Non-Hodgkins Lymphoma.  Brooke and I immediately teared up, as she shared that she is a survivor.  To meet a survivor, brings us to tears.  I know that will be my Elizabeth someday.  We are planning an EBB Roller Skating Day soon (I will post details as soon as I have a date) and I will try to have Be the Match there to register people.  It is literally 4 swabs of your cheek.  No pain, but lots to gain by entering yourself in the registry.  Many of these kiddos need stem cell  (bone marrow) transplants.  They especially need more Hispanic and African American donors in the registry.  You can go to www.bethematch.org to find out more information on bone marrow registry.  It was a very uplifting day.  When the kids got home from school they showed me all of their valentines.  Elizabeth’s teacher Mrs. Beebe stopped by with a special box of Valentine’s for our special little girl, as well.  PURE SWEETNESS are the teachers at Cross Roads Preschool.  Elizabeth will hopefully get to go back to school just in time for the end of the year party.  She misses school so much.  But lately she just hasn’t felt up to doing much of anything except mega munching on everything imaginable.  Yesterday she wanted everything from `ribs at Bobby Q’s to mac n cheese from Boston Market.  She has been snacking on not only chips and salsa but also pizza and guacamole.  She just wants nothing to do with vanilla ice cream or grape anything.   Vanilla used to be her favorite flavor, but steroids have pretty much ruined that one.  She is about halfway done with the steroids and it is going really well.  She is beginning to look like my little chipmunk with all the fluid she is retaining in her cheeks and tummy.  She’s my sweetie.  She is in really good spirits all of the time, lately.  She looks forward to her bath time and walks in the stroller.  Yes, can you believe it!  Walks in the stroller.  I invested in a jogging stroller this week at Hissyfits, our local consignment store.  I thought my stroller days were over.  Unfortunately, I sold them all just before Elizabeth was diagnosed.  Elizabeth really looks forward to the walks outside because her legs are just too weak to walk extended periods of time.  Sometimes we go out several times a day.  She LOVES it!  She falls asleep sometimes, just like the good ole days.  Yep, I remember those days, rollin’ around da neighborhood poppin’s wheelies with the stroller.  E is getting me exercising, which feels so good right now.  I have not taken the time to exercise in so long.  I really miss the peacefulness it brings me.  Although, I wonder if it is considered exercise when you walk a half a mile up the street to Smeeks, the local candy store, to purchase a half a pound of candy and back home?  If you’re using the candy as weights perhaps?  But don’t worry with the way Elizabeth is making me get her and I out running, I’ll be doing half marathons again very soon.  She’s the best personal trainer a gal could ask for.  I’ll add that to her resume along with slaying cancer.  Things EBB is really tough at doing!

Sign and Send! SO EASY!

Speak Now

We are the voice for our children

Letter is already just sign and send.  SOOOO Easy!

http://www.kintera.org/c.8hKOI3MFIjI2E/b.6440521/k.82B3/Action_Items/siteapps/advocacy/ActionItem.aspx?c=8hKOI3MFIjI2E&b=6440521&aid=517204

http://www.whitehouse.gov/contact/write-or-call#write

http://www.whitehouse.gov/contact/submit-questions-and-comments

Thanks for filling my heart with rainbows,

Elizabeth

Be the Match

Instead of spending $200 on dinner, consider doing this today.  Brooke and I will be there closer to 11:00.  If you can’t make it today, you can order a kit to be sent to you through the mail.  To enter the bone marrow registry it only takes a swab of the cheek.  I think there are misconceptions that it hurts.  It’s not painful in anyway to enter yourself into the bone marrow registry.  We are showing the love in the way of…

Be the Match

http://marrow.org/Pages/DonorDriveSearch.aspx?key=002-4-09686

Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases need a bone marrow transplant. Doctors search the Be The Match Registry to find donors for their patients.  Help save a life

Happy Valentine’s Day

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.

Read this article

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html

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