Be Strong. Fight On! In Memory of Zach Guillot.

On Friday, February 7, 2014 at the age of 9, Zach was granted his angel wings to "fly and love" with another honored hero Aidan "80" who battled the same type of blood cancer.  Even though I did not personally know Zach and his family I have been following their journey for quite some time.  Zach's family is originally from the Dallas area but he has spent the last year in Seattle at the Fred Hutchinson Cancer Research Center touching the lives of every person he met!

Zach battled AML for FOUR years and endured THREE bone marrow transplants!  AML is Acute myelogenous leukemia and one of the most aggressive forms of leukemia especially in children.  AML usually is given a 50/50 survival rate.  

His mother Julie said the doctors described him as a "medical marvel" and he "contributed much to the knowledge of how AML can be managed and treated."  He was also regarded by his medical team as one of the "toughest kids they had ever met."

Julie has asked that those who followed Zach's journey share the following "far and wide" and I'm honored to help spread Zach's journey to our friends and family because if this can help one family not lose their child to AML that is enough!  Childhood cancer isn't easy and it isn't friendly...it is BRUTAL and from the mothers I personally know and ones like Julie who I've followed...the stories of what their precious children endured and what they had to witness is beyond comprehension.  My heart breaks for them.

If you'd like to make a difference...here are the items that Zach's mom listed:

1) Donate blood or platelets in Zach's honor.  Zach required bags and bags of blood and platelets to fight an internal bleeding transplant complication.  Visit the Red Cross website or Carter BloodCare for locations near you.

2) Enter the Bone Marrow Registry.  I've posted about this multiple times and the previous post lists a Bone Marrow drive on Friday, February 14 at Children's Medical Center in Dallas.  For other information please visit Be the Match or Delete Blood Cancer.  Both feed into the same database, so if you are registered with one you are technically on both.  If you are interested in hosting a drive at your place of business or church just let me know and I can put you in contact with individuals who can assist you!

3) Donate your baby's cord blood. If you are pregnant you can save a life by simply donating your baby's cord blood (from the umbilical cord). Cord blood donation through Be the Match is SAFE & FREE! Zach's last transplant was a double umbilical cord blood transplant....two unrelated anonymous mothers gave Zach a 3rd chance at life and Julie stated "on the day of his death, his new baby blood cells were proliferating wildly and he had new blood, free of leukemia!"

4) Help the Guillot family directly fund AML immunotherapy at the Fred Hutchinson Research Center. Immunotherapy involves engineering specific white blood cells to RECOGNIZE cancer cells as foreign and DESTORY them, without the toxic side effects of chemotherapy. The Fred Hutchinson Cancer Center in Seattle, the birthplace of the bone marrow transplant and world experts in the immune system, has developed killer T-cells that can recognize and kill AML…these cells are working right now in a small group of patients who remain in remission. 

Last I want to share a video that was made by someone who doesn't know Zach nor do I know this person but it was shared on Zach's facebook page which I strongly encourage you to visit.  This is a beautiful and inspiring video.  Listen past the young man talking at first...the song has always been one of my favorites and has remained on my race day playlist for the past 3 years...when I need that extra push this song does it...and now every time I hear it I will think of Zach. 

In closing, many still ask how or why we continue our involvement with LLS?!  

This is WHY...because no child should endure 4 years fighting cancer!  And HOW we do it...is by being a part of Team in Training and raising funds for life-saving research.  LLS is funding the immunotherapy that was mentioned before...that is why I've posted the Fire for Fire video so many times to help bring attention to where your donations are going!

So I also ask that in addition to one of the above please consider making a donation to my current Nike DC half marathon event and help us continue to fight for a cure!

NO SURRENDER!
(the way Zach's mom signed every facebook post)



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Share you Heart...Show you Care this Valentine's Day

Children in the hospital this Valentine’s Day won’t be able to trade valentines with their friends, but with your help we can still make their day special! Check out the links below or visit the sites of children's hospitals in your area for a program.

1) Choose a valentine, designed by a Texas Children’s a patient (Houston), and type a personal note, or pick one of the fun notes provided. Cards will be delivered to patients on Valentine’s Day. Free of cost.

2)  Send an eCard to your friends & family and share the warmth of Valentine’s Day. eCards feature artwork created by children being treated at Texas Children’s Hospital (Houston).  When you make a donation and select the design you can send it to up to 25 recipients. 

3) Send an eCard to friends and family on any holiday including Valentines.  eCards are designed by children at Medical City DALLAS.  Donation is requested.

4) Become a registered Bone Marrow Donor with BE THE MATCH. Donor Registry Drive on Friday, February 14 at Children's Medical Center in DALLAS!  Please click the link to find out more and sign up to SAVE A LIFE!

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One Love for 80...Help Needed

80 and his mom's hand

Aidan (or 80) as some call him is a TNT honored hero and he needs our help!  I have not personally met 80 and his family but Andy, my friend, knows them and I get my updates from him as well as the One Love for 80 facebook page.

80 and Andy this past weekend

80 has had a long battle with leukemia most recently that diagnosis has turned into AML (Acute Myeloid Leukemia).  80 needs a bone marrow transplant but his family members are NOT a match and currently there is not a match in the registry so we need MORE people to sign up as donors!

On Sunday, February 17 in Prosper there will be a BONE MARROW DRIVE...please come out and get swabbed. By getting swabbed this puts you in the database with two organizations - Delete Blood Cancer and Be the Match.  We encourage you to get familiar with both.  Delete Blood Cancer is the one sponsoring 80's drive this weekend.  You must be between 18 and 55 and in good general health. If you are found to be a match, you will be notified separately and given more information on additional testing.

ONE LOVE FOR 80 - Bone Marrow Donor Drive

Sunday, February 17, 2013

1:00 PM – 5:00 PM

Lighthouse Christian Fellowship Church

4255 E. Prosper Trail 

Prosper, TX

I have a PDF that I can email if you have a church group or organization that you are willing to email this information too or you can just send the link to this blog.  We need as many people to get swabbed...not only for 80 but for others whose life depends on finding a donor!

Please do not let a lack of information or misinformation STOP you from getting swabbed or becoming a donor.  Click the above image to learn the FACTS.

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Prayers for Nory

Meet Nory Mae...I first heard about Nory on February 15 from a friend, Berkley. Berkley mentioned Nory at dinner as she is friends with the parents (they are from the area) and that the doctors couldn't determine what was wrong with her...she is only 2 years old.

The next morning Berkley posted on Facebook that Nory was diagnosed with CML (Chronic myelogenous leukemia). A type of leukemia that is normally seen in older adult males. My heart went out to her family and I just couldn't believe that another child was going to have to battle cancer. The good news was that CML is treatable long term (in most cases you can live with it) as in your take chemo at certain times the rest of your life. Seems strange you can live with cancer but the more I find out about blood cancers the more I see this.

However, 2 days later Nory's parents received more news...and news they weren't hoping for. The oncologists believe that she has an underlying issue called MDS that caused the CML. But with this condition the leukemia will eventually become AML (Acute myelogenous leukemia) and the best cure for many patients with AML is a bone marrow transplant...so the search for a bone marrow match began.

I immediately reached out to the family to help and Nory's parents asked (if needed) would I help with a bone marrow drive. Our Triathlon mentor, Bill, jumped on board too. He is a survivor himself and has CLL (Chronic lymphocytic leukemia) and contacted the necessary parties to get things moving.

BUT...it just so happens that one of Nory's brother's is a MATCH! This is incredible news and a true gift from God. The study I read states there is about a 35% chance that siblings are a match.

As of today, that is all I know. I follow her story and all the updates on their FB page. Bill (our mentor) and I hope that we will meet them soon and have included Nory in our honored heros. Bill has dedicated his training this season to Nory!

I know (like most of you) that no parent EVER wants to hear the words "Your child has cancer" but I believe that something good comes can come from this and that is the friends, family and even strangers that surround that family when they are most in need. I believe that is God...holding that child and family as close to him as possible and showing them the vast network of individuals that will help them get through this journey.

So what am I asking?

• First and foremost I'm asking that you add Nory Mae and her family to your prayer list.
• Second consider becoming a donor for Be the Match.
• Third if you are able please make a small donation to our fundraising efforts in honor of Nory and her journey to becoming cancer-free.

If you'd like more information on blood cancers and current statistics please download Facts 2012 published by The Leukemia and Lymphoma Society.

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Join Be the Match and Save a Life...FREE to register in January

On average, more than 54,000 new potential donors join the Be The Match Registry each month; 6,500 of those new members join online via the “Join Now” web page. The grant from American Express will offset some of the associated costs for adding those who join online...normally the cost is around $50 for the kit so this is a big saving...in more ways than one!

When you join the Be The Match Registry, you are joining to help any patient in need of a bone marrow donor. As a volunteer, you are never under any legal obligation to donate and your decision is respected. However, a late decision not to donate can be life-threatening to a patient, so please think seriously before deciding to join!

You can give hope to patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases. Patients especially need you if you are between the ages of 18 and 44. That's because younger donors produce more and higher-quality cells than older donors.

The American Express Foundation has provided a grant to cover some of the costs associated with joining the registry online for the month of January. Service to its customers and to the community has been a hallmark of American Express throughout its 160-year history.

And joining the registry is easy...it’s a swab of your cheek!

JOIN NOW and SAVE A LIFE

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