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How Much Do You Know About Becoming a Bone Marrow Donor?

Me and my Dad the summer before he got sick

People always tell me that they can’t believe how happy all of us Hawk DJs are all of the time and that they’re jealous that our lives are so fantastic.  I can’t speak for my co-workers, but the truth is that I’m not always happy- a lot of the time my smile hides the hurt in my heart.  My biggest source of sadness has been my dad’s health.

In the fall of 2011, my  dad was diagnosed with an extremely rare form of cancer called Myelofibrosis. Myelofibrosis is a disorder of the bone marrow, in which the marrow is replaced by scar (fibrous) tissue. This means that my dad’s bone marrow is dry. Bone marrow is basically a factory where various blood cells are produced. Blood cells are a necessity to live. When a person’s bone marrow is dry, it means they’re not making the blood cells they need to survive. Obviously, this is bad. My dad is one of the lucky ones. Most people wait years for a bone marrow donor. Some never find the bone marrow they need. A bone marrow match was found for my dad and he had a successful transplant. Dad was doing so well, but the bottom has begun to drop out. Here’s a piece of an email my mom sent to us kids last night:

Hi Kids,

Yesterday we went to Boston. The news is not so encouraging. The doctor suspects that Dad’s transplant is failing. We are not sure yet though. They did a test on him yesterday and the results will take a few weeks to know. His spleen and liver are enlarged a lot. He needed another transfusion. His body is building antibodies against receiving blood from other people. He is needing transfusions a little too much.

But – there is a chance that he can have a “Boost” of cells from the donor. If this happens there is a chance that on the second try it will work. We don’t know if the insurance will cover this or not yet since we don’t know if he needs it yet or not. We don’t know an awful lot.

The doctor is not thinking this is going well so far though. We go back next week on Wednesday.

Please step up the prayers, if you don’t mind.

Love,
Mom

 

My faith is strong that whatever is supposed to happen will, but no kid wants to watch their parent’s health deteriorate. It’s pretty crummy if you ask me. With that said, I have a favor to ask you.  I’m wondering if you might consider looking into becoming a bone marrow donor.  See, my dad absolutely wouldn’t be alive today if it weren’t for a young man from Germany who signed up to donate and ended up being a perfect match for my dad.  While the transplant appears to be failing, my dad has lived a year longer than he would have if he’d never had the transplant.

I’ve learned a whole lot about bone marrow this past year. I’ve been doing what a lot of people do when they don’t know what else to do- I’ve been reading and calling doctors and staying up all night trying to find the miracle treatment for my dad.

The more I talk to people about being a bone marrow donor, the more frustrated I get. There’s a major and urgent need for bone marrow and yet nobody really knows anything about it. And there are a lot of myths that scare people away. So I’m going to dispel some of those myths right now.

Myth #1: You must go to a clinic to get tested and it involves a Goliath of a needle scary enough to make grown men cry. I hear this all the time and it’s not true. It all starts with a simple swab test. You send away for the kit, it comes in the mail, you swab your cheeks and send it off and they add you to the database. Of course there will be needles eventually. How else will they get the bone marrow out of you? But that doesn’t come until much later. And if you’ve survived an epidural and child birth you’re gonna be just fine with the procedure.

Myth #2- It costs an arm and a leg to donation if you end up being a match and it does funky things with your medical insurance. Actually, no. If you register to be a bone marrow donor with the National Marrow Donor Program, they won’t pay you for your marrow, but they’ll cover medical costs, reimburse all travel costs and provide other assistance as well. Can’t promise your boss will be so cool with giving you time off to save a life, but if they’re jerks about it, shame on them.

Myth #3- Once registered to be a bone marrow donor you can’t change your mind and if you’re a match you’ll be hunted down and forced to go through the procedure. As far as I know, we still live in a free country. And while I think it’s be pretty crummy of you to be a match for someone and then back out, it’s still your choice. If you change your mind that’s cool. But what’s not cool is dodging calls from the registry. If you’re a match for someone and you don’t have the guts to tell them you don’t want to donate, they won’t know to start looking for another donor right away and you can really put the person in need at risk of losing their life.

Here are the two ways a person can donate bone marrow according to the National Marrow Donor Program:

PBSC Donation:

Peripheral blood stem cell donation is the most common form of donating. This is a non-surgical procedure (yay!). For 5 days before donation, the donor receives daily injections of a drug that increases blood forming cells in the bloodstream. On the 5th day, the donor’s blood is removed through a needle in one arm and passed through a machine the separates out the blood forming cells. The remaining blood is returned to the donor through the other arm. Donors may experience headache, bone or muscle aches for several days before collection. These side effects typically disappear shortly after donation within 1 to 2 days.

Marrow Donation

Yeah- this is the one that people don’t like too much, but suck it up buttercup! You’re saving a life! Marrow donation is a surgical procedure. While the donor is under anesthesia, the doctor uses needles to withdraw liquid marrow from the back of the pelvic bone. After donation, marrow donors can expect to feel some soreness in the lower back for a few days to several weeks. Marrow donors are typically back to their usual routine in 2 to 7 days.

Registering to be a bone marrow donor literally only takes a few minutes and in the end you could help save a life.  Think about it and do some research. THIS site should help answer your questions.

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