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Posted on November 27, 2009 by Sharon McClain

Hi Gina!

As promised here are a couple of pics of Camden Lynn and the Cord Blood that was collected.  In the end we didn't get the media coverage we had hoped for and that was a bit disappointing but trust me...there was a lot of education provided to staff and visitors courtesy of the Webb Family and all seemed really impressed with how easy the collection process was and nearly all were completely unaware of the opportunity to make a public donation.  As for the donation process and shipment...easy, peasy...and we could not have been "Congratulated" or thanked for Camden's donation more by the representatives at Cryobanks, they were wonderful to work with!

We as parents could not be prouder...a beautiful baby girl for us and heartfelt prayers that the joy and love her arrival has brought into our lives will also bring hope to a family in need.  It's truly overwhelming to contemplate what this simple "gift" could mean to someone desperate for one more day to live, to love, to dream and to fight!

Wouldn't have known about this amazing opportunity to save a life without you and your amazing boy...thank you, thank you, thank you!

Much Love From Iowa,

Kristi

Posted on November 27, 2009 by Sharon McClain
Posted on November 27, 2009 by Sharon McClain
 Via email

Hi Gina :)

I know it's been a long time since you've heard from me, but just wanted you to know that you & your family are still and forever present in my heart. I continue reading your CB journal every time you post, and have also done my part in Evan's honor by giving blood & getting swabbed. 

 I also wanted you to know that James had to do a report for English on someone in his life that has passed on and he chose to do the report on Evan. He also had to do an "altar" in memory of this person (made in a shoebox). I'm attaching a copy of the report and a picture of the altar he created (front & back). When reading his report, I was intrigued by the things he remembered, like Evan's voice & hair :) For the "altar", James said he "put the big pic of Evan in the middle of the water, because that's where he is". Anyway, just wanted to share this 6th grade boy's memory of your precious Evan who will continue to be with us forever. Hope you like it.

Much love,

Kelly P

Posted on October 23, 2009 by Sharon McClain

Hello Cousineau Family:

It's Ann Carpenter, one of the MANY people that is inspired by Evan's story/journey, bravery and courage and your continued bravery and passion to fight childhood diseases such as Evan's and save lives through Donating Blood.  I'm also on caringbridge and have signed your page a few times (www.caringbridge.org/visit/ascarp).  I don't get to sign as often as possible, but I do check your site frequently to keep up with you.

I wanted to let you know that Evan continues to be an inspiration to me in so many ways, and I know he is making a difference, through his inspiration and his fight.  Because of your courageousness to continue to fight, HIS story and legacy will FOREVER LIVE!

You, and EVAN are ALL saving lives, just by being such inspirations.

In the past few years I had wanted to donate, but had not been able to because of various health reasons of my own that prevented me from doing it, or made it unwise at the time.

TODAY I went to school and American Red Cross was having a blood drive and I DONATED!!!!

It felt so good, and I certainly felt proud.  They asked me why I was donating and I explained that there were many little kids I have come to know and love on Caringbridge.org and among them is Evan.  

Please know that your encouragement, information, and passion has inspired another to walk in and give blood in hopes of helping others.  

I attached some pictures for you to see.

Thanks for all you do, and most of all, THANK YOU, DEAR ANGEL EVAN for all you did on this earth and CONTINUE to do forever and on!

With Love HOPE and a new sense of Confidence (All because of EVAN),

Ann 

Posted on September 26, 2009 by Sharon McClain
So here is a story for the books: I didn't explain it as well as I should have  the other day when we talked, but after your visit, you were famous in our lab. Your Mother's Quest Video was playing on multiple computers in multiple rooms, for weeks. The Lab members who were not at the meeting, watched and were shown, and most people took your video and words of inspiration home to show to extended family and to make them aware and sign them up also.

One of the youngest in the Lab Matt who is also referred to as Matty (who is part of the CB group but don't think you have met in person); he can not be a donor, and he is upset with himself and absolutely heart broken about it. We spent hours over the summer discussing, how we both are limited, how we both do not know what the future holds, but right now is what matters. He is very smart and is making scientific advances constantly. After long summer nights of working late together alone in the Lab, he had something to declare. He said, "You know how I am going to be a hero, and join Evan's entourage, by donating my mind to finding cures, and preventing pain!!". from then on out if anyone from the lab would disrupt him while working he would hold up his forearm with his Evan's Bracelet (lol like it was his police badge), and say "I am working hard for Evan, I can't talk now. My brain is a organ too, and it is not sick".

Now I should have told you this story much much sooner because Matty is amazing, Loving guy, and Evan's vibrancy comes to work through Matt every day!

We love your cause, We Love your Son, We Love you, and We love your entire Family!!!

I have pictures on my phone that I wanted to send with this but gosh darn it I can't upload them so have to try when I don't have a pounding headache. Just thought it was important for you to know that a day, nor a second goes by that your boy isn't creating change, in our lab alone.

With love,
Sharon
Posted on September 19, 2009 by Sharon McClain
Received via email 
 
Hi Gina! 
I pray that you’re having a good day and if it’s been a rough week (you’ve been a bit quiet) I pray this brings a smile to your face.  Sending this from work since I can’t seem to get to my computer at home.  With the upcoming birth please be sure to send any response to my home, wasn’t sure if I should send to your bahbad or aol address let’s give bahbad a try!
 
A little background...I work for a Fortune 500 company, and a company that has been consecutively listed as one of the Fortune 100 best companies to work.  My company employee’s somewhere in the ballpark of 15,000 employees (give or take some give to recent cuts and layoffs) and one of the “perks” afforded to us are message boards where employee’s can post questions specific to parenting, cooking, gardening, auto etc and wait for a colleague to post their response to the board.  One of the boards that I have been frequently recently is for Pregnancy (imagine that!) and just a day or two ago an individual posted a question regarding private cord blood donation...which company to use, pros and cons of each company and...was it worth it to bank the cord blood?  Well, you can imagine my excitement...  I had planned to post a detailed message regarding public cord blood donation after returning to work so I could provide a picture of the entire donation process but given the circumstances I felt the time was right to shed a little light on a subject you have helped to bring near and dear to my heart!  Now I know that on a daily basis there likely aren’t 15,000 employees surfing the Pregnancy message board but I do know that there are a number of people that utilize this valuable resource and I’m hopeful that my quickly drafted post (need to summarize a bit more for general consumption) will provide some food for thought...just a reminder that every little thing we do, every time you reach out to someone the message gets carried along to who knows how many others.  Out of who knows how many people that view this post a seed may be planted in 1 or 2 but that 1 or 2 may be able to offer the hope that a patient and family in need have been praying for.  It’s a small world, remember your impact.  This one’s for Evan...
 
Much Love From Iowa,
Kristi 
 
Please note that the attached links should be viewed on your own time.  Thanks!  Also wanted to mention that I’m not at all interested in starting a debate on public vs. private cord blood donation but wanted to shed a bit of light on an option I had little knowledge of until a friend pointed me in the direction of public cord blood donation.  From her family’s own tragedy she was motivated to get the word out regarding public cord blood donation.  When the “unthinkable” struck her family they learned that her own child’s cord blood (which had been privately banked at birth) was of no use to their son, nor were his siblings...a cord blood transplant was ultimately deemed the best treatment option and two cord blood matches from the NMDP’s national registry were used for transplantation and provided their family with hope for the future.
 
I have personally never privately stored any of our children’s cord blood.  With baby number one the concept was rather new and the cost was prohibitive and thus little consideration was given to private storage.  With baby number two I did a bit more research and in our families case decided not to privately bank our son’s cord blood because we did not have a child or close family member with a condition that could potentially benefit from transplantation; and the reality is that most conditions that might be helped by cord blood stem cells already exist in your infant’s cord blood.  So, along comes baby number three and since the birth of our last child I have learned quite a bit about public cord blood donation and have become quite passionate about this public option; baby number three’s cord blood will be donated to the Be The Match Registry (National Marrow Donor Program – NMDP), a national registry.

 Public cord blood banking (or donating) means that the baby’s cord blood will be stored in a cord blood bank and is made available to anyone in need of transplant.  It may also be used for research purposes to help bring us closer to finding “the cure” and/or new treatments for many otherwise life-threatening diseases such as malignancies, bone marrow failures, immunodeficiency’s, etc.  Depending on where you live in the country you may not be the least bit familiar with this public banking option, my own OB/GYN had little awareness of this public option but once educated on the topic was excited to come on board with our donation plan!

 Public cord banks pay for the collection procedure and the storing of the baby’s cord blood so there is no cost to the family for donating the cord blood.  There are currently no cord blood banks located here in Central Iowa though there have been recent discussions regarding the feasibility of developing a bank for the state of Iowa.  The University of Iowa does currently operate a research program and collects cord blood donations from deliveries performed at the U of I but there are no other locally housed banking facilities in the state.  In my case, I am using Cryobanks International for the donation of our child’s cord blood.  Cryobanks offers both a private and public storage option and works in partnership with the National Marrow Donor Program to store cord blood for the NMDP’s national registry and helps to coordinate transplants for patients in need and the process has been simple enough thus far...the downloading and completion of a health assessment, getting my Dr. to sign-off on the request and forwarding to Crybanks for review.  Just yesterday I was notified that I have been accepted into the program and the required collection kit is being mailed out to me this week...just in time for baby!

 The decision to privately bank umbilical cord blood is an intensely personal one and only you know what’s best for your family but I did want to remind people of this public donation option...particularly for Mom’s-to-Be who may not have previously given any consideration to the options that exist for their child’s cord blood. 

Our family is looking forward to the birth of our baby and are hopeful and prayerful that the life-giving cells found in his/her umbilical cord blood will give hope and new life to a family in need.
 
Kristi
 
 
Additional Information regarding How to Donate, Where to Donate and other questions you might have regarding Cord Blood Donation are addressed at:

 There are a lot of great resources out there that discuss private vs. public donation including the American Academy of Pediatrics, National Marrow Donor Program, Be A Hero, Become A Donor and WebMD just to name a few:

Shortcut to: http://www.aap.org/advocacy/releases/jan07cordblood.htm

Shortcut to: http://www.aap.org/advocacy/releases/jan07cordblood.htm

Shortcut to: http://marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html

Shortcut to: http://www.bahbad.org/howtogetinvolved/donate-your-babys-cord-blood.aspx

 
Posted on September 19, 2009 by Kelsey

As a senior in high school, I've been busy writing my college essays. One of the prompts was to elaborate on a person who has influenced me, and to describe that influence. I had no difficulty in choosing my topic. I know it doesn't contain the full synopsis and many details, but I did have a length limit. While I did write this essay to hopefully get into my college of choice, I was writing it for Evan and his family as well. It is just a simple way for me to show that Evan lives on and continues to inspire me everyday.
 
 
Forever Nine Years Old
                       
Evan Christian Cousineau, a small and lively little boy, will never know the impact he has on my daily thoughts and actions. How can a seemingly naïve, young child have such a strong hold over me?
           
While cheering his team on to victory, I laugh to myself at the sight of Evan’s coaches trying to contain his boundless energy and enthusiasm. Days later, this same bundle of energy was diagnosed with a metabolic disorder, ALD, which in the course of six months would rob him of his sight, his speech, and eventually his life. After being told Evan’s disease was terminal, his family refused to accept the idea of his suffering and death, and they found refuge and hope at the University of Minnesota Medical Center, which pioneered bone marrow transplants for boys like Evan. A double cord transplant from two unidentified donors was a success and it seemed Evan would recover. Unfortunately, post-transplant infection took his life on the eve of his and his twin sister’s tenth birthday.
           
Through Evan’s ordeal, I am reminded that life is fragile and fleeting, and that tragedy does not discriminate against young or old, rich or poor. We are all susceptible. The silver lining on this very dark cloud is the lesson I learned in giving. I can give blood, I can give bone marrow, and I can be a hero to someone in need. We all feel inclined to help our family and friends, but Evan has influenced me to look past my immediate relationships and recognize my potential to affect the lives of complete strangers.
           
Everyone has the potential to be a hero. Nine year old Evan showed me the way. How will you be a hero?
Posted on September 18, 2009 by Sharon McClain
Brining Life into this world and Saving another life at the same time.... 
 
Gina,
Here is my daughter, Jamie, my son in law Joey and our beautiful new Granddaughter, Dakota Rose Bisant born 9/17/09 at Scripps Memorial.
Jamie was able to donate the cord blood and it appears that all went well there. While she was in labor there was discussion and concerns about publically donating the cord blood. They told Jamie they were  unsure as to whether Jamie was gong to have to have a fee or not. Fortunately Joe had the donation papers with him and showed the staff there all the details given to them on the how/when/where ect....and it worked! I am proud of my girl that she followed up on this and so proud of my new Grand daughter.....coming into the world and helping at the start! I want you to meet Jamie, Joe and Dakota one day soon. Thanks for the encouragement to do this simple thing.....Hopefully Jamie's experience will encourage other Moms to do the same. I will be scheduling you to speak in my second semester....and hopefully at least for my class Jamie can come in and share her experience as well. We are thrilled to honor Evan this way and hope we can help some more!
Patti Peviani 
Posted on August 21, 2009 by Gina
From Caringbridge Guestbook:
 
FRIDAY, AUGUST 21, 2009 6:54 PM, CDT
Hi Gina, I am one of those "strangers" you mentioned...but I do feel like I know you a little bit because I follow your CB = ]  I wanted to say thank you, as many others have, for being so forward about your message.  I do not feel threatened at all; rather, I feel motivated, almost like you are my mommy telling me to get my booty working on something I should have done a long time ago...and I mean that in a great, wonderful way = ]  I am 19, and three weeks ago my dad left this world after a 10 month battle with pancreatic cancer.  He was a wonderful man, and one way that seeped into his actions was in his life-giving blood donations, which he did faithfully to the day.  I don't know that he ever missed a day...he always wrote in his planner the next time he was eligible to donate, and then he would be at the center on that day.  That was one of his greatest heart-breaks when he found out he had cancer...that he could no longer donate.  He was going for the world record in donations. In honor of him, and because of your motivation, I am giving for the first time this week.  I regret that it has taken this much to push me to do so.  I am also preparing to join the bone marrow registry.  I say "preparing" because I, too, have come to hate ignorance (and it seems to be prevalant in this generation), and I want to truly understand what I am doing and who I will be serving by joining.  I WILL be joining, though, so no worries...
= ]  Through your writings, you have helped me understand people better.  I have learned some ways to better handle the grief of others, as well as my own.  I NEVER say the words "I understand" anymore, because you have taught me that NO ONE can understand tragedy like the victim.  You have touched my heart, softened it toward families and children undergoing horrific illness, and now I am going to nursing school.  I hope to be a positive light in the hell many families face in the hospital setting as their children suffer.  Anyway, sorry for the long message...THANK YOU for being honest and for spreading your passion.  
Abigail
Posted on July 21, 2009 by Gina
I am so sick and tired of people saying how "PAINFUL" bone marrow donation is while they have NO first hand or even second hand experience with it.  The media has done a horrific job of scaring us to death.  How can WE possible effect the incorrect media coverage regarding the PAIN??
 
Watch this clip from the movie "Seven Pounds" which portrays absolutely FALSE information as to how one donates their marrow. 
 
FYI, all donors who have the privilege of donating marrow are sedated and all have very little or no discomfort following the procedure. All say they feel like they had a hard workout in the following days, a little sore and achy, gladly feeling this way knowing they saved a life!!
Posted on July 21, 2009 by Gina
If you haven't taken the time to view this yet, find out why this website exist by listening to Evan's Mom and Sister share his family's journey.  And then pass it on to a friend.  We are calling each and every human being to action to recycle their bodies and give hope to patients in need.
 
Did you realize that the human body possesses vital resources that can save lives?  Most do not and that is the mission of the Be A Hero Become A Donor foundation....to provide education, awareness and opportunities to share those vital resources that cannot be made, and can only come from another human being.
 
Help us spread awareness and start recycling your body by donating blood and your baby's cord blood, and committing to the Be The Match Marrow and Donate Life Registries.
 
Go to "How to Get Involved" page to find out how.
 
 
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