Thursday, September 5, 2013

Myths about Bone Marrow Transplant



Hello All.

My name is Pat,  I am the one lucky enough to be Cami's daddy.  How I got so lucky I will never know.

 I am here to educate you a little about Bone Marrow Transplants (BMT's) so you can educate others. 

After the past few weeks of talking to people since Cam's relapse..  I've noticed that almost every single person I talk to doesn't know the facts about BMT's.

In fact, the stuff they think they know is wrong, and prevents them from adding themselves to the national registry (if they even know there is a registry.. which most don't)  I work with about 50 guys, I would guess that maybe 3 of them are on the BM registry, which is super poopy. 

About 99% of the people I've talked to have the exact same mis-conceptions about the BMT process.. I'm going to call them "Myths".. and here they are.   

Myth: All you need to be a donor is the same blood type as the patient.

Nope.. there are 10 markers in the DNA that need to match up perfectly in order to considered a match. In fact, you don't even have to have the same blood type at all!


Myth: You need to draw marrow to get added to the national registry.

Double nope.  All you need to do is swab your cheek and send it in.. thats it!!! They can deliver a kit to your house.. it's so easy.  And if you're LUCKY.. one day you'll get that special call asking you to save a life. 


Myth: Pieces of Bone Are Removed.

Marrow donors only give up liquid marrow, taken from the pelvic bone or through PBSC donation where your blood is removed via an IV and passed through a machine that seperates the blood forming cells. No bones or pieces of bone are removed.


Myth: Donating Is Painful

In the roughly 25 percent of cases in which surgery is required, the procedure is done in the hospital under general anesthesia. The patient is unconscious and feels no pain as doctors use a needle to withdraw liquid marrow from the back of the pelvic bone.  Patients generally go home the same day and are back to their usual routines within a few days with only a small amount of discomfort.  


Myth: Donation Is Bad for the Donor's Health

Every medical procedure involves some risk, and bone marrow donation is no exception. But no more than five percent of the donor's marrow is harvested - not enough to cause any problems. The cells replace themselves in four to six weeks. You take risks every day driving to work or whatever.. the chance to save a life is worth the risk, in my humble opinion. 


Myth: Donating Is Expensive

Donors don't pay to donate. The patients insurance or the National Marrow Donor Program takes care of the donor's travel costs - and reimburses other costs on a case-by-case basis.


Myth: The Need for Donors Is Declining

Each year, more than 10,000 Americans are diagnosed with life-threatening conditions like leukemia or lymphoma. For many of these patients, the only hope of a cure is a transplant from a donor. The need for donors is increasing - especially those from racially and ethnically diverse communities, according to the National Bone Marrow Donor Program. Most patients who need a marrow transplant do not have a matching donor in the family. These patients depend on unrelated donors.



Caden, Cami's brother, isn't a match for Cami and after checking the registry, my daughter has ONE perfect match -ONE and we still don't even know if he's going to do it. 

Maybe if all these myth's weren't out there more people would be in the registry and we wouldn't be relying on this one guy to save my Cami's life. 

Please come to our bone marrow drive and swab your cheek.  If you can't be there.. go to bethematch.org and order your free kit.   You can always say no later.  Just get into that registry!  I can't imagine how awesome it would be to save a life... TO SAVE A CHILD'S LIFE!

There will be a bone marrow drive at Cami's fundraiser this Saturday (September 7th) where you can come in and swab your cheek and get into the system.  It's fast, its free and it means the world to us!





The amazing Shauna Lake and Channel 2 are doing a story about Cami and this drive Thursday night (the 5th) at 10 PM!  Tune in and check it out!  

Love you all, thank you for everything,
Pat

PS- watch this touching commercial, it just hits so close to home!

38 comments:

  1. I went to High School with Chelsea. I am a year younger. I am going to be in Sea World on Saturday and can't make it to event on Saturday. I did go online and I signed up to be a Donor. I have a kit coming in the mail. I would love if I was that perfect match for your sweet Cami. I have been reading your blog from the begging. You guys are so brave. I have Three girls and it would be so hard to watch any of them go through this. I would hope if it was my child, someone would be willing to be a donor for them.

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  2. I found Cami's story on Facebook and brought back so many memories. My sister-in-law passed away 12 years ago from leukemia and left behind 3 beautiful children. Since that time if have come across other, less invasive options for treating cancer that makes so much sense to me. These are alternative treatment centers that treat cancer naturally. Here is an alternative cancer treatment center in Arizona http://www.anoasisofhealing.com/#axzz2e3BufPJQ. Another good resource ifs greensmoothiegirl.com who has studied extensively about alternative cancer treatments. I wish your family and Cami the best of luck and God bless you.

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    Replies
    1. Dear Anonymous,
      This page is about getting on the registry for bone marrow donation.
      My 26yo daughter was just save by the compassionate selflessness of a complete stranger on Feb. 1, 2013.
      Did you know that without aggressive treatment an individual with an acute form of leukemia only has a week to maybe 6 weeks to live? Even the Gerson Therapy, whose principles "greensmooiegirl" follows, plainly says on their website that they cannot treat acute leukemia.
      http://gerson.org/gerpress/question/what-conditions-are-not-treatable-with-the-gerson-therapy/. The Burzynski Clinic does not treat the acute forms of leukemia either. http://www.burzynskipatientgroup.org/treated
      Even the top alternative doctors have stated that in the case of acute leukemias, that conventional therapy must be sought. Please think before posting comments like yours above. Thank you.
      A cancer mom.

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  3. Thank you for correcting these myths that are out there. I hear the same things from people whenever we talk about being donors. My brother had a bone marrow transplant 10 years ago and although none of his immediate family are matches we all got registered and hope that maybe someday we can do for someone what my brothers donor did for him. I hope that Cami is able to get the transplant that she needs. Good luck to your family.

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  4. I am registered but need to be more proactive about making sure every person I know is registered too. Thanks for the info and inspiration. Go Cami, GO!

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  5. I can't make it Saturday but would like to get on the registry.Is there a faster way to do it then sending away for a kit. Can I go to a specific place. Our family prayers are with you all.

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  6. Thanks for this post. Just signed up and am awaiting my kit. I can't imagine the heartache you must feel for your daughter, and as a parent of two young kids I saw your news story and felt inspired to take action. I am praying you find a match soon.

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  7. Thanks for this post! My son Tyson Moll (who you may know from GPP, aka Bam Bam) has been on the registry for a few years,and has always been an inspiration to me. But, I had never gotten on the registry myself. I just ordered my kit tonight. Thank you so much for the extra push. Sending Cami and the rest of the family, lots of love and hugs! God Bless you all!

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  8. Thank you this made me sign up for a kit. I believed all these myths until reading this.

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  9. I registered after reading your blog with Cami's 1st fight against cancer. I hope you get a great turnout and add many many more people to the donor registry! I hope that one day I DO get that call and am someone's perfect match. I will pray for the person that is Cami's one match, that can realize what an amazing girl you have and what a gift he can give your whole family!

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  10. Just ordered my free kit :) Sharing this article with all my friends and family in Utah <3 Thank you for the facts about Bone Marrow Transplant.

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  11. I would love to be tested. I love Cami! What a sweet little girl! Emily R.N. (RTU)

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  12. Cami we are praying for you! I am Austin's mommy from your 1st grade class. I enjoyed getting to know you when you were in my little group for the fire house field trip. You are one amazing, cute, adorable, strong girl with an awesome spunky personality! I am going Saturday to your fundraiser to get my cheek swabed. I hope I am a match! I would be your donor in a heart beat! :) Austin says hi and that he hopes you get better soon.

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  13. Sending positive thoughts your way. I'm part of a committee for a friend in Boston. We are holding our 6th drive this year next week, and have helped register hundreds of people, yet remain waiting for his match. Keep fighting the good fight, and stay positive.

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  14. Prayers for your sweet girl. I just registered as a donor and never knew how easy it was. I hope more people will be inspired by your story and go register. Keep fighting Cami!

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  15. Signed up for my kit as well! Cami you are such a strong, brave and AWESOME girl!! I look up to you in so many ways! Keep on fighting! You are absolutely gorgeous!! You and your family are in my prayers!

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  16. My SIL is currently battling AML and was lucky enough to find a match within the family. After reading your story I have contacted Be The Match to see if we can do a registration drive during a fundraiser run we are having in October. We will pray for your sweet Cami and that a match will be found for her.

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  17. THANK YOU THANK YOU THANK YOU. I too was totally misinformed on the entire situation. My husband and I have both ordered the kit. I hope I do get the call I would LOVE to help in such a simple easy way.

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  19. For our son Austin's 1 year anniversary of being diagnosed with ALL, we are holding a blood drive and bone marrow match testing in St George on September 13th from 10am to 3pm at the Dixie Regional Medical Center (400 East hospital in the cafeteria conference room on the lower level) all are welcome to donate blood and to be tested and added to the Bone Marrow Registry.

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  20. I can't make it today but I requested a kit :) Fingers crossed :) So if I was a match they would contact me for you?

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  21. Is it true if you are a female that has had kids they wont use you as a donor?

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  22. I so wanted to do this but don't have $100 right now. I will save up and do it when I can.

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  23. @Jolene It's free!

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  24. We saw the line of those signing up last Saturday. Can we ask how many Kits did you send in?

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  25. @Anonymous They had 450 kits and ran out in 1.5 hours. Pretty amazing!

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  26. I am so sorry to hear that you are once again battling leukemia with your precious Cami. I am already registered with bethematch.org. My 8th grade daughter's kindergarten friend relapsed as well 2 years ago-she's hanging in there and returning to school this fall-I will pray for Cami. Is there anything else that we can do to make her feel better? I'm so very sorry.

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  27. hi, i signed up to be a donor a few years ago - is there anyway i can check to see if i would be a match for Cami? do i need to call the donor registry? please let me know as i would love to be a match and help save her life!

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  28. I just registered to be a donor online tonight because I read about your story on Shawni's 71 Toes Blog. The kit will be here in a few weeks and I am hopeful that I can someday help someone. I didn't know anything about registering to be a donor before tonight. Thank you for clearing up some of the myths for me!

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  29. I have been following Cami's battle since the beginning she is an amazing little girl who has amazing parents! My husband and I have both now registered on be a match. Neither of us realized how easy it was!

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  30. I have been sporting my Cami Strong bracelet and in the first 2 days 3 people asked me what it was for and after an explanation they all said they were going to get a free kit!! ❤

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  31. I'm totally inspired by Cami (and sweet Millie...friend of the Flamms). I immediately went to the registry site to order a kit, but they are trying to charge me $100! I will call them because I see its supposed to be free! Perhaps that is a reason people are deterred from registering! I can't finish the registration without entering my credit card info and paying $100. :-(

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  32. I'm unable to register due to a blood disorder similar to Factor V Leiden... I am completely bummed, but figured that would happen as I'm also unable to donate blood. I have lost two beautiful family memebers to Leukemia, and this hits home for me. I plan to spread the word about the registry, we need more to join!!! Go Cami!!!

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  33. This post answered a lot of questions I had about the process, but I've now signed up and am awaiting my kits. Thank you for the information, and our thoughts are with you and your family.

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