Got 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)