unday Sharing - We should be {frugal} with our Money but Never with our Hearts, Our Love or our Compassion for others

This week on Sunday Sharing I thought I would feature a way for us to help others and yet have some fun too.  It is simple...click HERE and take a quiz and for each question you get right 10 grains of rice will be donated to the United Nation World Food Program.

The game tests your vocabulary (no worries...if you get the word wrong...it tells you the right answer and you will get the word again)...but what is nice to know is that for every click you get right you are helping feed someone.

I helped feed someone today as I was sipping my "Liquid Gold"....have you?  It is super easy!

Sunday Sharing - We should be {frugal} with our Money but Never with our Hearts, Our Love or our Compassion for others featuring Locks of Love

This week on Sunday Sharing I wanted to feature Locks of Love because I think my hair is finally long to donate or super close to it!  I am super excited.  The last time my hair was long enough to donate I had it cut in Jersey by some amazing people who donated their services to the Ronald McDonald House.  They gave me a day of pampering that I so desperately needed.  I had nothing in my hair...no color, no highlights it was just long and pulled in a ponytail because it had not been in any sort of priority in my life.  After I got my haircut I felt guilty that I had not donated it....I know I had so much on my plate at the time since Savvy was still fighting so hard...she was pre-transplant but I still felt bad for not remembering.  When we are in the mist of our hard times we sometimes forget that others are suffering with hard times themselves...

My hair is almost long enough...I think it is and I am so excited to go and get it cut so I can donate it.  It is still not processed and heck I think I only have one or two gray hairs...not bad for an almost 40 year old ;)

So, I found the information on Locks of Love HERE. Locks of Love is an {Amazing} organization that allows people to donate their hair so children who have suffered hair loss can have wigs made for them. 

Their Mission Statement

Our mission is to return a sense of self, confidence and normalcy to children suffering from hair loss by utilizing donated ponytails to provide the highest quality hair prosthetics to financially disadvantaged children. The children receive hair prostheses free of charge or on a sliding scale, based on financial need.

The organization does not keep a list of participating salons so you would have to look for a Locks of Love decal display or simply call them up before you go.  If they don't participate in the program I bet the salon would help point you in the right direction.

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others featuring the American Heart Association Walk

This week on Sunday Sharing I want to introduce you to a friend, Tom Savoie.  Tom could be your neighbor, your friend, your son, your husband, your father.  He is a loving father with 2 beautiful young girls....and a loving husband to an amazing woman.   

Let me let Tom tell you about his cause and why he wants to help others:

At age 39 the last thing on my mind was having a heart attack.  But on April 23, 2007, I found myself in the emergency room triage with the nurse telling me that I was having a heart attack and they would me rushing me back to the cath lab for an angioplasty. 

I ended up having one complete blockage on the right side of my heart.  They placed a bare metal stent in that artery.  They say there is no such thing as a small heart attack, but I was very lucky that there was no damage to my heart muscle.  I was fortunate to get put into a Cardiac Rehab program, but at the time I was the youngest person in there.  I learned alot from the older people in the program and they learned from me that a heart attack can happen at anytime in life, it's just not an old person's disease. 

Last year I was able to participate with the Cardiac Rehab group in the American Heart Association Heart Walk.  I raised $500 toward research on heart disease.  I am walking with the group again this year and my goal is to raise $1000.  Please consider donating at the following website http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=332181&lis=1&supid=307892711 And remember heart disease can happen to anyone at anytime in their life.

Thank you,
Tom Savoie

Tom is walking for us all.  He is walking to raise funds for the American Heart Association to help further education and research about Heart Disease.  When I stayed at the Ronald McDonald House in New Jersey while waiting for my daughter to receive her liver transplant I met babies with heart disease....yes...babies.  I also met mother's who were living at the Ronald McDonald House awaiting to give birth because they knew their child would be born with heart problems and would require immediate surgery.  Heart disease affects so many....just like liver disease....it affects us all.  I am so proud of Tom for literally walking the walk and helping others through the American Heart Association walk, others who may not even know at this moment that they will need his help.


Please consider helping Tom reach his goal as to benefit the American Heart Association...simply click HERE.

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others Featuring Jason Weaver

This week on Sunday Sharing I wanted to feature Jason Weaver.  So many people want to help and educate others about pediatric liver disease and don't know how...Biliary Atresia, the disease my daughter was born with is the most {common} pediatric liver disease and yet I had never heard of this disease prior to her diagnosis....have you ever heard of this disease? 

There is no known cause and no known cure for Biliary Atresia.  This Super Papi is going to make a difference in educating others...and he is doing it his way...through his love of Star Wars.  I love this father's vision and his mission. 

Let me let Jason explain his vision in his own words:

First, I want to say thank you, to Ana, for letting me take over her blog for one day. I'm not much of a writer, so I'm a little nervous. 

My name is Jason.  I'm a son, a brother, a husband, a best-friend, a bit of an artist, a Peter Pan, a self-proclaimed GEEK, but most importantly, I'm a dad.

I'm not really a blogger, or at least I never meant to be.  I started my blog to keep myself on track and show progress of a project that is very personal and important to me, not to mention, really, REALLY fun.

My son, Denim Wayne, was born with Biliary Atresia. To put it simply, he was born without a gall bladder, or the bile ducts from his liver to his large intestine. At a month old, he had major surgery, at 2 months, we were still wondering how things were going to turn out. At almost 18 months, you'd never know there was anything wrong with him.  We chalk this up to all the love he has received, and more importantly, to the power of the prayers people made on his behalf. But, as well as he is doing, things can change very quickly.

My son being born with this horrible condition made me decide to outwardly support the first causes I've ever really cared about. I want to raise awareness of pediatric liver disease, and encourage organ donation.  But I didn't want to just wear a bracelet (which I do, every day "Your Liver. Your Life."), or sit at a table while people stuffed money in a basket or jar.  I just wasn't sure what I wanted to do.

I'm a huge Star Wars fan, and a few months ago, I made a Star Wars friend on Facebook. This friend was a droid like R2-D2, name R2-KT, or Katee, built in dedication of a little girl, Katie Jackson, who died of cancer. Katie's father, and the builder of this pink droid, take Katee to all kinds of events and conventions, and use her to spread the word and teach people about cancer. You can find Katee's website at http://www.r2kt.com. If they could do it for cancer, why couldn't I do it for pediatric liver disease?

So, R2-BA, or "Bili," was born... Or at least the idea for Bili. I decided that I would also build a droid to support a cause. I decided to do this, and jumped right into it, so that I wouldn't put it off and lose interest. I'm going to build this R2 Unit, and take her, along with information on Pediatric liver diseases, and organ donation, to different sci-fi conventions, local festivals, parades, and other events. I will probably also offer to attend parties and other stuff like that to raise money for the charities.

I started a blog to keep myself motivated, and to keep track of my progress. It's title "Journey to Bili," and you can find it at http://r2-ba.blogspot.com . There, I go into a little more detail about Denim, and have pictures and reports on my progress. You can also donate to the Bili Build fund.

Thanks again to everyone for all your support.

Jason, Thank You for taking your vision and going for it.  I truly believe that love can change the world and you are a testament of this.  The love for your child has driven you to help....to raise awareness and to raise funds so that one day {in the near future I hope} a cause and a cure can be found.  Thank you for sharing your Heart, your Love and your Compassion for Others.

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others

This week on Sunday Sharing I wanted to take a moment to give a {{Heartfelt}} thank you to The Village of Moms.  I was asked to share our story....the story of a Warrior Princess and the Gift she has been blessed with.  I am grateful to have been asked to share our story and to continue to advocate for {Organ Donation}.


Although I have never met our donor angel's family...and may never meet them...I made a promise to them.  A promise to honor their Gift.  I want to Thank each of you who took the time to read our story at the Village of Moms and who came to visit our site.

I would love to invite you to visit Mami on a McMission and to help our family reach the goal of donating a Welcome Wagon filled with new toys to the Ronald McDonald House in Fort Lauderdale on December 29, 2010.

I have never been able to sit down and write about our Gift without shedding tears...not once.  I can not express to you how deeply meaningful the Gift of organ donation is to a family....I will never be able to express my gratitude to our donor angel's family.  I gave birth to Savvy...I gave her life on December 5, 2006...and the family I love that I have never met gave life to her on December 29, 2007.

Make video montages at www.OneTrueMedia.com

Please...from a Mami who watched her innocent baby fight for her life...from one that prayed to God to take her last breath so that Savvy could have one more...from one who made plans to donate her child's organs if she did not beat her terrible disease...please I beg you...when you are fighting for your loved ones life .. {begging} is the least you will do...I {Beg} you to consider organ donation...

Leave of Legacy of Life.

If you need to put a face...a familia to this story...simply {CLICK HERE} and watch the PBS show I videotaped this past May.

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others featuring the Guardian Ad Litem Program

This week on {Sunday Sharing} I want to feature the Guardian Ad Litem program.  In Florida, there is a Guardian Ad Litem program that helps children that have some type of court involvement...very likely a great deal of involvement due to abuse, neglect or for being at risk.

In the past both my husband and myself have been Guardian Ad Litems.  What is a Guardian Ad Litem?  They are the eyes and ears of the court..  They advocate for the child....they are the voice of the children.  If you are interested in volunteering (or even a paid position) with the Guardian Ad Litem program please visit guardianadlitem.org.  (Please note if you do not live in Florida the program may be called the CASA program - Court Appointed Special Advocates...you can find more information HERE.)

There are still thousands of dependent children who have no voice in court...

As I take on the position of Executive Director of the Statewide Guardian ad Litem Program, I wonder how we can help more children? How we can provide a more stable future for children aging out of the Florida’s dependency system? How can we help children with their education? How we can keep families together? How we can provide a powerful voice on behalf of Florida’s dependent children?  It is an overwhelming and critical responsibility. 

Then I remember that, as with all difficulties in life, we cannot do it alone.  In Florida, there are tens of thousands of children who have been abused, neglected or abandoned by the adult in their life and are a part of the dependency system.  The Guardian ad Litem Program helps these children through volunteers – currently the Program has 7,000 volunteers who give a voice in court to thousands of children.  But the need for more volunteers is great.  

There are still thousands of dependent children who have no voice in court.  Perhaps you could be the voice? Perhaps you are the volunteer that will ensure a child has visitation with her little brother; the volunteer that will ensure a child is progressing educationally, medically and emotionally; or the volunteer that will ensure that decisions made are in the child’s best interest. 

Perhaps you are the volunteer that will make all the difference in one child’s life.  Please join our dedicated group of volunteers and staff in helping provide a powerful voice for children in court – one voice at a time.
Sincerely,

Theresa A. Flury

Executive Director

Florida Statewide Guardian ad Litem Office

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others

This week on Sunday Sharing I wanted to feature the Andrew McDonough B+ Foundation.  I receive regular emails from Andrew's Caringbridge site...this was a site I learned about a few years past...my daughter was a few months old and was fighting for her life and I don't remember where I learned about Andrew but when I read the loving words and on his site with this gorgeous young man fighting so hard I started to follow his journey.  His journey did not end when he went to heaven for the love this young man had within him and his family has grown in only the way love can grow.  Here is the information from the "About the Foundation" page.  Please visit www.bepositive.org to learn more about this amazing young man, his family, and the foundation built with love.

The Andrew McDonough B+ Foundation honors the memory of Andrew McDonough, a 14 year old athlete and ‘A’ student at Salesianum HS from Wilmington, Delaware.  Andrew went from playing four soccer games on January 27, 2007 to cardiac arrest and a diagnosis of leukemia and sepsis just 48 hours later.  Andrew’s blood type and the family’s motto was, and continues to be, “B+” …“Be Positive”.  Andrew’s valiant journey was chronicled by local and national media and his website received over 1,000,000 hits in the first six months.  Andrew went to Heaven on July 14, 2007.

                                  Do Good
Inspired by Andrew's caring attitude and positive outlook, we established the Andrew McDonough B+ Foundation. There are four objectives, but the overarching goal is to "Do Good" ... as Andrew did!  With your help, we will continue to achieve our four specific objectives.

Objectives           

1. Do Good by providing financial support to families of critically ill children.  To date we have helped 200 families in over 30 states with almost $200,000.

We have helped numerous families from around the country in their time of greatest need...

“I remember just crying and crying with unbelievable gratitude when I received the grant.  It was on a day that I had a $3,500 injection to purchase for my daughter.  I cannot tell you the positive and life-changing experience B+ hasbeen to our family. Not just with the money, but the friendships, the passion of the family, and the new supporters and friends that my daughter now has.  I want to THANK the foundation, the financial supporters of the foundation, and the family and friends of Andrew McDonough."  

                  -- S.M., mother of child with cancer

“I can’t believe anybody who did not know me would help me when I needed it.  A million thanks to them…the B+ Foundation.”
                  -- G.W., mother of child who

                  passed away in March 2008

 

“As a kid with cancer, it was nice to know that there are people out here in the world that LOVE me and helped my family.  Thank you Foundation of Andrew McDonough.  Thank you a million times!” 

                                                         -- K.B., 11 year old warrior with cancer 

 “Thank you very much for the wonderful donation.  My parents used the money to pay some medical bills and I got some comic books too.”   

                                                         -- R.D., 9 year old warrior with cancer

"Foundations like B+ truly understand the emotional and financial roller coaster that families impacted by pediatric cancer encounter. Your foundation is a true blessing."                                           -- L.C., mother of child with cancer

"Words cannot express my extreme gratitude of thanks for the wonderful generosity that you have shown our family in our desperate time of need.  It is comforting to know that there are still so many wonderful people that are willing to help... We are truly blessed to be included in the phenomenal B+ Nation." 

                                                          --K.T., mother of child with cancer

 

        B+ and You Help Families Across the U.S. (in dark blue)

2.  Do Good by funding medical research for pediatric cancers and improvements in chemotherapy.

We recently awarded the Nemours Center for Childhood Cancer Research (DE) our first research grant for $250,000.  The grant has been earmarked to fund a High-Throughput Screening device, which will accelerate the drug-discovery process to develop new chemotherapy treatments and ultimately a cure for pediatric cancer.
We are also working with Dr. Thomas Walsh, Head of the Immunocompromised Host Section of the National Institutes of Health (NIH) in Washington, D.C.

3.  Do Good by spreading the B+ message and helping others to "Live Like Andrew" -- set goals and try your best, show affection, and be comfortable with yourself.

Through outreach efforts and talks we share the lessons Andrew taught us, including: have fun, have faith in God, keep our lives in perspective, appreciate our blessings, and make time for our loved ones.  In short, we need to “Live Like Andrew”.

Andrew’s father, Joe, has spoken to dozens of groups including school and church groups, service organizations such as the Kiwanis and Rotary Club, sports teams, as well as being the keynote speaker at commencement exercises. More about his talks here.

4.  Do Good by providing financial aid to families with kids who want to attend Salesianum High School in Wilmington, DE.  This is in memory of the school Andrew loved.

We currently have 7 scholarship recipients who have demonstrated financial need...

“Thank you for giving me the opportunity to go to Sallies through the Andrew McDonough Scholarship Fund.  You have been unbelievably generous to me and my family.  Thank you so much.”   

--J.H., scholarship recipient

“I am so grateful to be able to attend Salesianum School and I am very happy there.”       --J.G., scholarship recipient

“You cannot imagine how much your family has changed my family’s life forever.  Thank you very much for your assistance.”
--J.D., scholarship recipient            

If you'd like to contribute to the B+ Foundation, we can provide acknowledgement letters for your tax deductible donations.
Kindly send your donations to:

Andrew McDonough B+ Foundation
101 Rockland Circle
Wilmington, DE 19803

Or donate online with your credit card.

The Andrew McDonough B+ Foundation is an IRS-certified 501(c)(3) non-profit organization.

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others featuring Make-A-Wish of Southern Florida - {Facebook page}

 This week on Sunday Sharing I wanted to share with you a simple way you can help...no money...very little time (I mean seconds) and will mean a great deal to two children in the South Florida area.  I am certain that if you could help a child who has faced more then anyone should ever face in life have a magical wish granted then you would...here is an opportunity for you...an opportunity to help grant 2 wishes and what you have to do is so simple..

What's the easiest way to grant 2 children's wishes? Help the Make A Wish foundation of Southern Florida reach 10,000 Facebook fans by 10/10/10 (October 10, 2010) and Immuno Laboratories, a leading food and environmental allergy testing facility will donate $10,000 to grant the wishes of 2 local children. Click “Like” at the top of their page or, if you are already a Fan, please spread the magic by suggesting that your Facebook friends become our Fans.

 This is such a {Truly} AMAZING organization ... my daughter was granted her Make-A-Wish trip which we will never forget..please help them out..it is simple..it is {Free}..just "like" their page and be a part of granting 2 children their wish..help share the magic.

Click HERE.

Sunday Sharing: We should be {Frugal} with our Money but Never with our Hearts, Our Love or our Compassion for Others featuring Normal Moments

This week on Sunday Sharing I wanted to share with you an organization that I read about while flipping through a magazine.  I read the feature and I agreed so much...Everybody does need a "David".

From NormalMoments.org: 

My daughter, Melissa, was diagnosed with osteosarcoma, a bone cancer, the day before the beginning of her sophmore year of high school. We battled valiantly through chemotheraphy, septic shock, many surgeries, radiation, and the side affects of it all. Without my dear friend, David, who stepped in to care for the dogs, plants, and house during extended hospital stays both locally and out-of-town, I never would have survived. Sometimes, when we had to be at the hospital on a cold winter morning, I discovered that my neighbor had gotten up early and shoveled my drive way. On those special days, I had some extra time to share with my daughter and one less cause for exhaustion. When Melissa stopped eating everything but sushi, friends and family created the "Sushi Fund" at her favorite restaurant so that I didn't go broke feeding her. And when no one else really understood what it is like to sit by your child's side while her body struggles to survive, Sheryl was there to reminisce about her similar experience and I knew I was not alone.

Everyone deserves this kind of support and before she died, I promised my daughter that I would help make sure everyone has the opportunity.

Normal Moments is here to help.

Patricia Fragen
President & Founder

I remember coming home with my daughter from Philadelphia when she was 5 months old.   We had flown her up with an IV placed in her arm - she had spent 2 weeks fighting an infection after a liver biopsy at the children's hospital in Tampa and was shot up with enough antibiotics to allow us to travel to Philly to continue her care.  We flew with her to the Children's Hospital of Philadelphia where she was placed on a transplant list and given a PELD score (Pediatric End Stage Liver Disease Score which is an estimate of how long the doctors believe you will live)...My husband and I learned that we did not match our daughter and we could not donate a portion of our livers...our lives were turned upside down.

Upon arriving home we had a ton of mail.  I will never forget one piece of mail.  It was a notice from the management company (we rented) letting us know that they were about to start an eviction process.  We had paid our rent...that was not the problem.  The problem was that we had received a violation from the HOA because our grass had not been edged.  We had made arrangements to have our lawn mowed but it was not edged and we were not home to see that this had not been done.  We were sleeping and eating next to our daughter in the hospital.  Any HOA violation was considered a reason to evict...if we had arrived home 2 days after we would have arrived home to an eviction notice on our door.  Our baby was dying and we would have been evicted because of the {grass}.  If we had a "David" our world would have still been in shambles but some of the stressors we lived through were everyday stressors that we could barely cope with simply because we could barely breathe.   


There are times in our lives that we simply need to be held up...and times in our lives that we need to hold someone else up....

For more information about this amazing program please visit www.normalmoments.org.

Sunday Sharing because we should be {frugal} with our money but Never with our Hearts, Our LOVE or our Compassion for others - Karlee's Angels

This week on {Sunday Sharing} I want to feature Karlee's Angels.  When I read about Karlee I had tears running down my face because this beautiful little girl took what would conquer many adults and turn it into something so {Beautiful}.

I think the best way to share Karlee's story and her mission is to share her own words.

When I was 5 years old I had to face one of the hardest and scariest, challenges in my life. In December of 2006 my mommy and daddy found a big bump on my left lower leg. Ever since they noticed the big bump I had seen a lot of doctors and had a lot of scary tests done to me. After all these scary, long tests mommy and daddy found out what was going on with me. They told me what was wrong and I got very scared. They told me that I have a rare form of cancer called alveolar rhabdomyosarcoma. I didn't understand so they explained to me that I have a Pac-man inside my leg that is very hungry and can be very mean so we have to start a long, hard journey to try and get rid of it. I went through a lot of painful and sleepless nights. They give me lots of medicines to try and help me get through all this.

I started up a mean and yucky medicine called chemotherapy to try and get rid of this Pac-man. My mommy and daddy explained to me that these medicines are going to be very scary for me. They are going to make me feel sick to my tummy, make me feel yucky inside, and also take all my hair. I got really sad when I found out about my hair going away. I just didn't want anybody to laugh at me with not having any hair. My mommy and daddy told me over and over not too worry it will grow back, but it will take a while.

I had a long, scary journey ahead of me with chemo, doctor appointments, scans, 44 weeks to be exact. So I took all these yucky medicines, lost my hair, and missed school and friends, but my mommy and daddy kept telling me everyday that I will eventually get better and that is what counts!

Unfortunately in March of 2007, I lost my leg to this cancer spreading throughout my left lower leg in my tibia, and the doctor told my family and I that the best thing to save my life and to hopefully stop the spread of my cancer would be to amputate above my knee. So on March 28, they took my leg. They took 2 inches above my knee. I was so sad to go from 2 legs to now 1 but my mommy and daddy told me that they have these cool things called prosthetics. I really had no idea what those were, so we looked up a lot of different ones. I was very happy to see that they had these legs out there for people that have to go through what I did. It makes a big difference, and has for me since my amputation. I have been through several hips now and since I am still growing I will have many more done for me.

Cancer may have taken a part of my body and have put me through a lot of pain and fear, but I am still here and I am a fighter everyday. I have been cancer free so far for almost 2 years now. I have a 5 year survivor rate, so I am hoping that when I beat this 5 year mark, I can say YES CANCER FEARS ME!!!

My personal feelings and experience on loosing my limb:

FEAR:
how my life is going to be?
Will people laugh and stare at me?
Was I going to be able to do the fun things with my friends like I used to?
Will I have to be in a wheelchair all my life?
Will I be normal?

PAIN:
All the painful and sleepless nights I went through.
Going through phantom pains, screaming and feeling my leg when it wasn't even there.
Falling at night, while trying to get up and out of bed, forgetting my leg was gone.
Taking pain medication daily just to get through the day.

SADNESS:
Missing my leg that I had for my first 5 years of life.
Being told that I have to learn to walk again with some fake leg, not MINE!
Having monthly visits for leg fittings and castings just so I can walk.
Growing fast and having to learn how to use a new leg all over again because I out grew my other.
By the way I have out grown 8 hips so far, so that's a lot of fittings and castings, AND I'm still growing.

HAPPINESS:
I am able to walk.
I do have fun with my friends still.
I get to decorate my legs with cool fabric, whatever I choose.
The phantom pains do pass.
I don't have to take as much pain medicine any more.
The happiest thing, I AM ALIVE!

So is a Fighter!  She beat this cancer and in her journey decided that she wanted to bring a smile to the faces of other children like herself who are also FIGHTERS!  Karlee's mission is simple.  Give sick children a toy....just so they can smile.  You can learn more about Karlee and her mission HERE. 

Sunday Sharing because we should be frugal with our money but Never with our Hearts, Our LOVE or our Compassion for others - {National Marrow Donor program}

This week on Sunday Sharing I want to focus on the National Marrow Donor program. This week I received an email which was quickly followed by a phone call.  The email had words written that made my heart skip a beat with excitement and joy.

I am a possible match!  A match?  Yes, I signed up through www.Marrow.org after my daughter received her organ transplant. I know the struggle all to well to have the love of your life fight for their life ... and the worst part of the whole experience was knowing that we depended on a stranger to make the right decision and to say "Yes" to organ donation but in our case someone had to pass away in order for us to receive the Gift of Life.   

Imagine...just imagine if you could give this Gift to someone while on this earth.  Thing is .. we CAN!  We can sign up to be a match for someone who needs a bone marrow transplant.  It is super easy to do...simply go to www.marrow.org and they will send you a few cotton swabs.  You swab your cheek and send it back.  That is it!  That is all it takes.

I can not begin to express to you how much I want to be able to donate...I am waiting for the doctors to make the call and contact me with a Yes or a No.   As I type, I am in tears knowing that so many are awaiting this simple gift.  I know that the procedure to extract the bone marrow is not fun in anyway but to think that someone would rather not be uncomfortable for a short period of time in order to save another human being that is suffering, whose family is suffering is...simply beyond me.

Ask yourself...if your child had leukemia would you want a stranger to donate?  If your spouse was in a hospital bed fighting for their life would you want a stranger to donate?  If you had to make arrangements to give your loved one their last rights (which I had to do with my baby girl)...would you want someone to donate?  If you answer yes to any of those questions...then why would you not donate?

Please visit the National Marrow Donor Program HERE.

Sunday Sharing because we should be frugal with our money but Never with our Hearts, Our LOVE or our Compassion for others - Emerson White

This week on {Sunday Sharing} I wanted to do something a little different.  I am not going to feature a charity - although this child does have a non-profit charitable account set up through the Children's Organ Transplant Association (COTA) {HERE}.  My daughter has a COTA account as well and I can tell you that if you choose to donate to Emerson through her COTA account EVERY PENNY raised for her will be given to her family for transplant related expenses....you can learn more about COTA at www.cota.org.

This week I wanted to share with you a small glimpse into the story of an {AMAZING} little girl and that of her family.  Emerson White is the same age as my daughter...she is only 3 years old.  In her 3 years on this earth she has had 2 multiple organ transplants...that was not a typo.  She has had multiple organ transplants on 2 occasions.  She has lived in the hospital...not frequented the hospital a lot...I mean lived and raised out of state from her home in a hospital.  I "met" Emerson and have "watched" her grow up through an amazing support group I belong to liverfamilies.net and through her website CotaForEmersonW.com.  Emerson has fought for her life on so many occasions - so many times this child has proven that miracles do happen.  When doctors have told her mother, Erika, that there was no hope for her...she simply refused to believe it and has been by her daughter side every step of the way.  In doing so, she has had to leave her 2 young sons and husband at home...what she thought would be a short time period has turned into 2 years.

I share her story with you because Emerson {Finally} went home just a short time ago....home and then admitted back to her local hospital which quickly transferred her care to her other "Home".  It looks like Emerson has one more medical option left for her that may allow her to stabilize her little body...but if this option does not work then Erika has been told that there are no more options for her....these are Erika's words from her blogsite:

 

Submitted by Erika on Thu, 07/08/2010 - 2:49pm. 

I arrived last night with lots of questions as to how exactly Emerson’s central line “fell out”.  I’ve been at this a long time now & I can confidently tell you that just doesn’t happen (especially when it’s stitched to your skin).  I was told no one knows for sure but it appears that a volunteer may have accidently pulled it out when putting her back in the crib.  Okay… I can accept that.  Accidents happen.  I’m not thrilled about it, but am happy for an explanation that makes sense.
To be honest, I showed up last night with a bit of an attitude.  I was not happy about what was transpiring & there was no one to talk to.  I cleared out Eme’s hospital room with the plan to get out of here AQAP this morning.  I felt like I’d hit a wall with this team & just needed to get us both far from Omaha for a while.

It’s a new day today, though, & I’ve had the opportunity to talk to several people including the chief transplant surgeon, a member of the infectious disease team, & the NP (nurse practitioner).  She more or less runs the show up here & has been on vacation the past 2 weeks.  She missed a lot of the drama here & was generous enough to spend some time with me this morning re-hashing it all.  In the end she may have said the most sensible thing yet – she said she totally understands my want/need to do something & she totally understands my deep desire for that something to make a difference.  Unfortunately, though, she said they’ve all discussed it at great length & the overwhelming consensus is there’s just nothing left to do.  There is no something with any reasonable chance of making any difference at all.  So that’s where we are – at the end of our list of treatment options. 

I went further & said if this vesicostomy surgery doesn’t work & there’s nothing else to do I want this to end.  It’s so hard, it’s not as if Eme’s in the PICU on life support.  There’s no plug to pull.  She’s down the hall playing in the play room with a volunteer.  She’s breathing, walking, talking, eating…  To even have those thoughts in this situation is very, very difficult to reconcile.  As I’ve said before, though, if her only chance for a life is in the hospital, I don’t want that for her.  The NP said she totally understands & if this vesicostomy doesn’t work Emerson won’t live in the hospital battling infection indefinitely.  If this surgery doesn’t work the end is not far.  She is not several years away from her last infection… it will come much sooner than that.  Indeed, she said, if this surgery doesn’t work it will end.  That’s what I needed to hear.  Not sure exactly what I wanted to hear, but that is what I needed to hear.  This needs to resolve, one way or the other.  I’m at better peace today believing it will…

The plan this morning is to watch Eme for 24 hours & make sure her fever doesn’t return off antibiotics.  Assuming all goes well she’ll be discharged tomorrow morning & we’ll drive to Michigan for a week.  At first the team was a little surprised at this request (especially when I told them my original intent was to leave this afternoonJ), but they all agreed it would be okay.  I hope to take her back to the beach in August, but there’s no knowing at this point if that will even be possible.  I’ve learned to ‘strike while the iron is hot’ with Emerson.  Where there’s a small window of opportunity, take it! 
Eme’s next surgery is scheduled for 7:30 AM Monday, July 19th.  She’ll re-admit Sunday morning for pre-op.  I plan to be back in Omaha next Saturday.

I share a small glimpse into the trials that the White family is going through not to ask for money for them {although, if you can help please go HERE} but to ask for prayers.  I am a strong believer in the power of prayer.  If you don't pray I would ask that you think of this beautiful little girl and send some positive thoughts to her and her family...I simply ask that if you do pray...please pray for Emerson.

Sunday Sharing featuring St. Jude Hospital because we should be {Frugal} with our money but never with our hearts our love or our {Compassion} for others

I have mentioned many times that my daughter was born sick and we were blessed with a liver transplant when she was just a year old.  I know what it is like to pray to God on a daily basis to take your last breathe so that your child can have one more...I know the love, I know the anger, I know the fear, I know the joy...in her short little lifetime Savannah has taught me more then I ever learned in the 30 + years before her birth.

A short while ago a friend of my husband came to him asking for any information he may have to guide in helping his Best Friend's daughter...you see she is a child that was fine one day and diagnosed with cancer the next...literally.  She was given a few months to live and her parents were in the depth of a place no parent should ever have to visit.

This beautiful little girl was accepted into a trial study at St. Jude.  St. Jude Hospital....you have heard of them I am sure.  At some point I am sure you have seen their telethons asking you to donate.  You have seen Marlo Thomas carry on the amazing legacy her father began...but do you change the channel when the beautiful little children with bald little heads get too much to watch?  I don't blame you if you do.  I have sat and watched and changed the channel myself frankly because the tears don't stop flowing and I just can't bare it anymore...the thing is {they} can't change the channel, their parents can't change the channel...

Cancer, what a cruel disease.  The first time I learned this word was when we buried my {Abuelita}.  My grandmother died of cancer, then years later I had to watch my father fight it and take his last breathe because of this cruel disease...and I don't even want to tell you about the tears that are floating as I type thinking of the amazing women who have touched my life who have and still fight this horrible disease.

As I type my daughter is wearing an adorable "Warriors in Pink" shirt sent to her by her Yia Yia - cancer is an ugly, ugly word and one that no parent should have to hear....one that I know many liver transplant survivors have to deal with.  There is a form of cancer that parents of children who have received all fear...it is called PTLD and it starts with a simple virus "EBV"...too many initials and fancy explanations simply to say that at the end it can morph into cancer...how unfair?!

I was going to jump and simply encourage you to look at the St. Jude website because they are an amazing hospital working with children who have been diagnosed with cancer....but then I realized I wanted to explain my connection with this dreaded disease...it takes on so many forms and yet the bottom line is that it is a cruel and unfair disease that needs to be fought.

St. Jude is {Free} ... it runs off of donations ... it is a research hospital.  The priority is to save their patients lives...their children....our children...without our help they can not.  I know all too well what I would do to try and save my child's life.  If your child is healthy...  {{{hug them}}} ...hug them and tell them how much you love them even if they are annoying the heck out of you at this very moment ... for you are {Blessed} beyond words...

If you are thinking about having your kids do a lemonade stand this summer, or holding a yard sale to get rid of extra junk you have laying around consider donating the profits to St. Jude's...I can tell you that they will be very happy to deposit the $5 profit from the lemonade stand...

Do you want a {Frugal} gift idea that benefits St. Jude's ?  Check out the clearance section in their gift shop!  The adorable teddy bears below are 3 for $18!

This adorable Gift Set is just $12.99!

For more information on St. Jude's Hospital please click HERE.

Sunday Sharing because we should be frugal with our money but Never with our Hearts, Our LOVE or our Compassion for others - Give Kids the World

This week on Sunday Sharing I want to feature the most amazing place on earth, Give Kids the World Village!  You may never have heard of this extraordinary village nestled in the heart of Central Florida but I bet you have heard of the Make-A-Wish foundation which refers many of their children to this magical VOLUNTEER run enchanted land.

My family had the privilege to stay at Give Kids the World during my daughter's Make-A-Wish trip.  My daughter is 3 and like many little girls she wished to meet the Princesses at Disney.  We have such wonderful memories of the Wish trip and many of them were made at Give Kids the World.  Now, you may think that this village is filled with sick kids....the children in the village do have or have had very serious life threatening illnesses but we did not see any sick kids!  We saw kids being ... KIDS! and little girls being .... Divas!  Here is my little diva getting her nails done at the beauty parlor (just for kids....remember this is Give KIDS the World...the chairs are kid sizes, their bedroom and bathroom is the larger one, they get a present delivered EVERY day!).

This village has a playground that is a life size Candyland game....yeah...you can imagine my daughter's eyes when we turned the corner and saw this...and the most beautiful part about the playground and EVERYTHING at Give Kids the World is that EVERY CHILD has the ability to enjoy it...every detail is thought of.   Children can ride horses, or go on the carousel 30 straight times in a row, or eat ice cream (no detail spared...my daughter has a SEVERE dairy allergy..no worries they had dairy free ice cream...so for the first time in her life she sat with a spoon in hand at the ICE CREAM PARLOR!!!).  Oh...and we can't forget Mayor Clayton who stops by and visits to make sure you are eating your veggies!! 

There is such much to this magical place that I honestly think if we had spent a week at Give Kids the World and not visited any of the amazing parks that were included in our Wish trip it would have fulfilled her dream....yes, the Princesses come to Give Kids the World with their friends, Mickey and Minnie Mouse!  Even Santa comes every Thursday.  Magic...I tell you Magic!  And the Magic is created by volunteers!  There are a few paid staff members but you never see them...they are busy trying to raise funds and doing office work...the thousands of volunteer hours are what keep this village going.  To fall in love and learn about ways you can help this amazing organization you can go to  Give Kids the World by clicking HERE.

Did I mention that Mayor Clayton and his wife will stop by to tuck the kids into bed at night?!  Seriously, cute!  Here is my daughter waiting for her tuck in visit on the front porch!