Students with Heart

I'm so proud of my daughter Paris who spent her birthday yesterday sharing and raising money for our dear little friend Emily's BandAid Drive.  We know this is a time that studying and making it through these last few weeks of the semester is the focus, so a special thank you to the students of LC that donated to help the children of Children's Hospital. Paris is her mother's child so she spent a lot of the day yesterday in tears because nothing is more moving than seeing the hearts of people come together to help and bless others.  That's what its all about creating awareness, paying it forward, being the blessing. Emily came in to our lives close to three years ago at the beginning of our medical journey with Severe Aplastic Anemia.  She and Mireya became very close friends and looked forward to seeing and spending time with one another in and out of clinic. This little girl is pure joy and a fighter. Keep Emily and her family in your prayers for complete victory over Neuroblastoma. Visit her site www.emilyhubbel.com to learn more about this special little girl and her journey. Last year Emily and her family raised over 3000 boxes of bandaids.  This is her 2nd Annual Band-Aid drive and we are so happy to be able to participate in this effort.  Band Aid donations are being collected through this week.

To my girl Paris and friends...you are awesome!

Emily's On a Mission ~ We All Can Help

Meet our dear, sweet little friend Emily Hubbel.  Many of you may remember previous posts I've shared about Emily and Mireya.  The girls met on the Bone Marrow Unit last summer during their transplants.  Reya and Emily both love princesses, painting nails, and FaceTiming each other.  Being in the clinic all the time is no fun, but on days the girls are there together, illness and treatment are the last thing on their minds. They truly enjoy seeing one another and just hanging out being giggly little 5-year olds.  

Emily and Mireya are true warriors!  Emily was diagnosed in December of 2010 with Neuroblastoma, one of the most aggressive childhood cancers.  Mireya was diagnosed in the Spring of 2011 with Severe Aplastic Anemia, a syndrome of bone marrow failure affecting the creation of new blood cells.  Week in and week out they endure and undergo so much to maintain treatment plans to live and beat their respective diagnosis. 

So often we wish there was something we could do?  We all have the opportunity to do exactly that.  Emily has had so many help her, love her and support her and she wants to give back!  Emily and her family are hosting a Band-Aid drive for the Children's Hospital of Richmond's Pediatric Hemotology/Oncology Department (where Emily and Reya's receive care) and Helen DeVos Children's Hospital in Michigan.  Emily's Oncologist is located at Helen DeVos. 

#TeamBolton is asking everyone to buy a box of Band-Aids (or more) and either send them to the Hubbels or drop them off with me and I'll deliver them all to the Hubbel Family.  If you would like to participate, you can mail your Band-Aid donations to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

If you want to help with Emily's 1st Annual Band-Aid Drive, but you don't live close by and shipping is a concern, SmileMakers was very happy to offer a code, not only for free shipping, but also for 10% of all bandage purchases for this drive.  The code to use at checkout is 'MissEmily'.  This offer will be valid through 12/3/2012. 

http://www.smilemakers.com/Shop (search put Latex Free Bandages)

If you are ordering from SmileMakers or any other company that will not deliver to a PO Box please use the following address:

EMILY HUBBEL
3530 POST OFFICE RD #5383
MIDLOTHIAN, VA 23112-9998

The Hubbels would like to have all the donations in by December 3, 2012 so they may present them to the hospitals when they make their next trips. Here is the info needed for the Band-Aids:  

• any brand is fine

• latex free (since some people are allergic)

• regular sizes needed to cover when children have shots or ports accessed

 If you are interested in reading more about Emily's journey, please visit www.emilyhubbel.com or www.facebook.com/emilysjourney.  Thank you so much for helping to make this happen and please share with others.  

Bald & Beautiful

A few weeks ago a 'super' movement was created when several Moms of kids with cancer came up with the idea of the 'Bald & Beautiful' or 'Hope' Barbie. http://www.facebook.com/BeautifulandBaldBarbie   When I first received the notice to 'Like' this page, there were about 1700 followers, it has now grown to over 130,000 in about 4 weeks.  The power of social media is incredible.  If you really know how to capitalize on the power of people through these streams you could be dangerous, or quite a force to be reckoned with as we seen over the last few days when the Public Relations Director of the American Cancer Society decided to share his sentiments in a blog on The ACS site.  The post has since been taken down but it suggested that childhood cancer is 'exceedingly rare' and stated in opinion, this may be a publicity stunt, as he also made a mockery of yet another cancer 'token'.  You can imagine the backlash from such an ill thought out statement affiliated with an organization such as ACS.  I'm thinking his days there are probably numbered or his job in that capacity will be reassessed.  There's also the idiotic self-professed comedian that did a very thoughtless and offensive take on the Cancer Awareness Doll.  She now wonders why she's receiving hate mail and threats.  I do not condone violence, but I think making fun of sick children to illicit laughter is stupid, and when you took the time to make that disgusting video you opened yourself up to more than simple scrutiny. 

The idea of the Barbie hit the scene back in mid-December.  Mattel, St. Judes, and Hasbro were contacted about making a Barbie with no hair so that every little girl fighting cancer or illness associated with hair loss feels beautiful.  The even grander idea was that proceeds would be donated to organizations that support families, research and treatment of pediatric cancer and other illnesses in likeness.  Pediatric Cancer is the number one killer of children.  Statistically 7 children die and 46 children are diagnosed with cancer daily....hardly 'rare' and unless you've been there, walked in the shoes of the many that have and are, those are not statements or the stance to take out loud. 

Mattel has presented one of these dolls to a little girl as a part of a wish granted by the 'Make A Wish Foundation'.  So we know it can be done.  I would love to see the creation and availability of this doll in the near future.  I understand not every little girl plays with Barbie dolls or is affected by this situation, but the awareness it generates is noteworthy.  There are so many girls dealing with treatment that involves chemotherapy or illnesses such as Alopecia or Trichotillomania that want to feel like they belong and are included.   How awesome would it be to have a doll that looks like you or that you can relate to? Perhaps she would have some really cool knit hats, scarves or wigs?  I mean we know that in Barbie's World, accessories are a must!

There are two sides to every story and movement.  Some will be for it and some will not, largely because they have not been personally affected, or lack an appreciation for the difference this could make. When Mireya lost her hair, it was definitely a big change.  Mireya and I had a deal that if she lost her hair as a result of chemotherapy, Mommy would also cut hers, so she was not alone, but we really didn't put a lot of emphasis on it.  It's hair it will grow back and you are beautiful regardless.  The flip side of that is out in public we encountered stares, finger pointing, straight up questions (mostly from kids) and she was mistaken for and called a little boy on at least two occasions that I can recall.  These were uncomfortable instances, but you keep it light and moving.  I realize that kids are curious especially with things they've not seen or been exposed to.  Even if a child is not inclined to purchase the Hope Barbie, perhaps just seeing it as they walk down the aisle in a store could initiate conversation within a household about hair loss and illness in kids.

A great example of this is, my children have been around and spent time with a loved one in a wheelchair.  To them a wheelchair is just 'regular'.  When they are out in public, it's completely normal to see someone in a wheelchair and have an exchange with them just as if they were walking on two feet.  I've seen children who may not have been exposed to someone with different physical needs or limitations or they don't understand 'how' or 'why' someone could be confined to a wheelchair and are in the 'OMGoodness Zone' when encountering a similar situation. I love that the children can relate to this and do not find it odd.  There was another instance when we were greeted by a gentleman in a wheelchair and they wanted to jump in his lap, but that is the comfort level and sense of ease they have with it.  The first time we saw someone with only one leg in a wheelchair required some additional discussions.  You can't sweep away a child's simple and authentic reaction, but you can try to bring awareness.  There were many times I'd wished Mireya didn't have to experience the stares or alarming attention in public.  If I'm not mistaken there is a Barbie in a wheelchair.  I mean Barbie can be all things, why not Bald and Beautiful. I showed Mireya this picture Paris sent me last month of all her favorite Disney Princesses.  She giggled uncontrollably and said 'they got their hair cut, just like me'. In that moment, she identified with a place she has been and it was so cool to her to see this picture of the Princesses she adores.  They were still beautiful and identifiable without their long tresses.

One of our very favorite friends is Little Ms. Emily Hubbel, she and Mireya met on the Bone Marrow Transplant Unit.  Emily was diagnosed with Neuroblastoma one year ago.  She and her family just returned to Richmond from CHOP (Children's Hospital of Philadelphia) where they continue to seek the best level of care, programs and medical specialists for Emily. The Hubble family was interviewed this week about the Hope Barbie.  Take a look at the piece and please continue to keep Emily and her family in your prayers. 

Mattel is weighing the positives, negatives and marketing of a 'Bald & Beautiful' Barbie.  The decision to make the doll has yet to be determined.  Until a decision is made, we have the right to participate in the campaign to request it.  In turn, they also have a right to say no, but my hope is that they will decide to create this Barbie Doll.  It is a doll, but it represents so much more.  A doll that could make it easier to accept the reality of hair loss, a doll that could make a child feel better, happier and more beautiful.  A doll that could make a daughter not feel so bad about her mother's (or any close female family member) illness.  There are so many positives...and yes little boys have not been forgotten.  There has been a push mounting over the last few weeks for a bald GI Joe.  If you are in favor of Mattel making this doll and for the positive impact this could make for so many, please consider signing the petition by visiting change.org

Life Threatening & Life Loss

 A life threatening illness and/or it's diagnosis will instantly throw your life into a tail spin.  Week in and week out, I see so many lives that have been altered by aplastic anemia, sickle cell anemia, leukemia, hodgkin's lymphoma, neuroblastoma and other childhood cancers and blood diseases.  I see very innocent, yet courageous, kids who are fighting for their lives and parents that are doing all they can to take care of them, provide the best medical care they can and give them some semblance of normalcy.

I love Mireya and I know we are blessed.  I believe with everything in me she is cured and we will continue to reach milestones and take strides over hurdles until we reach the end of this race victorious.  I spent most of the night crying my eyes out as I learned through little Emily's Mom of two little angels that lost their battles this week to cancer.  One is a beautiful ten-year old girl named Faith, who like Mireya, loved all things princess and was also dubbed a 'Warrior Princess'.  The other, an adorable five-year old girl named Gabby who just after three short months passed away from brain cancer.  I don't know either of these families but my heart is broken for them.  I can tell from their pages and sites that these precious little lives have touched and reached many.  I didn't get much sleep and I've been consumed by the pain I know these families are going through.

There is nothing that prepares you for the diagnosis of a life threatening illness and certainly not for the loss of your child.  Hug your child(ren) tight, tell them you love them and cherish every moment you have with them.  The good ones, the bad ones, the ugly ones and everything in between, regardless of their age.  Make those wrongs right.  Tomorrow is not promised.  My personal prayer is that everyone know Christ as their personal savior because outside of the life we are not promised on earth, we are promised eternal life with Christ.  It's a simple confession.

Lord Jesus, I believe You are the Christ, the Son of the living God and that You died on the cross for my sin. You say in Your word that if I confess my sins and ask forgiveness, You are faithful and will forgive my sins and remember them no more.  You will not hold them against me and You will give me everlasting life. Come into my heart, I receive You now and make you the Lord of my life.  I thank You for the blood You shed on the cross just for me.  In Jesus name, Amen  

If you said that prayer, it's a blessed assurance!  If you're not at a place to do so or you don't have full understanding of what it is to be a Christian and have a relationship with Christ, I encourage you to get connected. I'm not the officiant on Christianity, but I am counted in that number and I love the Lord with all my heart, soul and strength. I don't know where I would be without him in my life.  I don't know how I would have endured all that has transpired in our lives this year without Christ in my life.  There is so much more I could go into here, but let's keep it simple and to the point. My heart has been so heavy.  I don't take this lightly, it is extremely important to me.  We all have faults and no one is perfect.  We miss it some times, but God forgives us.  He extends his grace and mercy to us beyond what we deserve, but that's the kind of God he is. God is love and I strive every day of my life to share and extend love to others and in turn I have been so fortunate to be on the receiving end of God's love for me and my family exhibited through the hearts and kindness of so many.

My heart goes out to these two families who have lost their precious little girls.  My thoughts and prayers are with them as they find the strength to endure this.  Live your life intentionally, let go of things that, in the grand scheme, just don't matter!  Don't sweat the small stuff, be thankful and give thanks for your life and the lives of those you care for so dearly.  Smile (your on Candid Camera), be kind, show love and most of all, have compassion for others because you never know what someone else is going through.  You have the power to make a difference!