What Can You Do To Help

Throughout this whole process, all my friends, family, coworkers, associates – everyone has been wonderful. When the discussion of bone marrow came up, I can’t even count the number of people that have offered to come in and get tested, to see if we’re a match. For each and every offer, I am unbelievably touched. Most people offered without even having any idea what they might be getting themselves in to, and honestly, I can’t say what I might have done in their place. I’m incredibly touched, honored, and blessed, to have such amazing people in my life.

But I feel bad, because for the most part, there’s not a lot to be done to help me out. Visit me, talk to me, text me, call me. Basically, help me keep boredom at bay while I have to sit at the hospital and flounder. That’s not particularly difficult, and I know that people out there feel guilty that they’re not able to help me more directly.

But there’s good news, here. There is something that you can do to help. Maybe not me directly, but let me explain.

Don’t they just look scrumscious?

You see, everyone out there that’s healthy has these delicious, magical little cells in their bone marrow, called stem cells. You have them everywhere, but we’re particularly interested in the bone marrow stem cells, because these are the ones that get transplanted for patients with all sorts of leukemias, not just mine (AML). And these magical little cells can and do help save lives every day.

The thing is, it is extremely rare to be a match with someone. Similar ethnic backgrounds help, but not always. I, for example, have 2 potential living donors (but unlikely that they match), and 3 samples of umbilical cord stem cells that match me. When I told that to people, almost everyone has said “Oh! I know someone who’s also 75% italian, 25% irish! What about them??”

Everyone, the thought is unbelievably sweet. And sure, I would love to see if they’re a match for me. But nobody should get their hopes up here. We’re talking about chances of less than 1% that they match me.

If you want to check if you’re a match for me, and only me, there is unfortunately a $150 charge for the initial screening, and several hundred more for the additional tests if the first batch come back as positive.

However, what you can do, and what I suggest anyone that is healthy and able to do, is register with the National Bone Marrow Donor Program. You can do so here.

Cute kid. You might save her life.

The thing with DNA is that it’s a numbers game. A 1% chance for 2 people of similar backgrounds to match is pretty terrible odds. A 1% chance that out of everyone in the world, there’s SOMEBODY out there that’s a match? Now we’re talking.

The sad reality, though, is that the numbers of willing donors don’t nearly match the numbers of people alive and able. I don’t blame anyone; I wasn’t a donor before this, and unfortunately, I’ll never be able to be a donor now that I’ve had (have) a blood cancer.

But I’m not you. If you’ve read my posts, talked to me, or otherwise been touched by anything that I’ve said, please consider taking some time to register. You can register for free at hundreds of local bone marrow drives all around the country. I bet there’s one near you, happening soon. And by doing so, who knows. Maybe I’ll be nom’ing on your bone marrow, recovering safely in the world’s most annoying hospital bed.

Or you could just be someone else’s hero.

The bottom line, though, is that you can make a difference in some family’s life. You could save someone else’s 27 year old son, or maybe somebody’s mom, or uncle, or father.

And after that, let me detail what it takes for the whole process:

Registering to Be a Hero

The registration part literally couldn’t be any easier. You show up to a bone marrow drive, or go to a clinic that does them, and they give you an envelope. Inside are 4 cotton swabs. You take 2 and swab your left inner cheek (mouth! get your mind out of the gutter!) twice. Repeat on the right side with the other two cotton swabs.

That’s it. No needles, no blood, in and out in a matter of minutes. The paperwork will take longer to fill out than the actual swabbing process.

Becoming A Hero

Most people in the registry never get called. Just like its an infinitesimal chance that any single person matches me, there’s a minuscule chance that there’s anyone else out there with your exact combination of antibodies that needs your marrows. So, for most people, all you ever need to do is swab. Good enough, in my book.

But in the off chance that you *are* called, the process is still pretty easy for you.

The first thing they’ll do is call you for additional screening. Unless you’re the only viable match for the person in question, chances are that they’ll want to do additional screening on you. That’ll be able to tell them whether or not they actually want to use you, or one of the other options that recipient may have. This may last for a few visits, but it’s incredibly important, as it basically tells the doctors what the chances of GVHD (graft vs host disease) may be incurred using your marrow, versus somebody else’s.

The next step, if they decide they want your marrow, is that you go to your doctor and pick up 5 prescription shots. You can self-administer, or have a doctor do it. They’re 5 small needles that you inject a natural hormone under your skin. This hormone makes your body produce a surplus of bone marrow stem cells, so that they are freely available in your blood stream. Your body already makes this compound, so there are no side affects associated here. This is what makes the next step so much easier than in the past.

The final step for the donor is you go into the hospital, and get 2 IV’s placed, 1 in each arm. From one, they draw blood out of your body, and feed it into a machine, similar to a dialysis machine. There, it filters out the stem cells, leaving your regular, normal blood in its place. Then your normal blood is put back into you through the other IV.

You feel very little during the process. It’s similar to giving blood, only better, because the blood only ever leaves your body for a short period of time.

And that’s it. No surgery, no down time, no recovery, nothing. You need to be in a hospital or transfusion center for about 4 to 5 hours, and with that, you can literally save someone’s life.

Being The Hero

No really, that’s it.

 

So please, think about becoming a donor. My sister will be hosting a drive in Westchester fairly soon. Information on it will be posted here, facebook, twitter, emails, etc. If you want to help me, consider this donation a “Well, I hope I match Tony, but if not, I can still save someone else” gift. It’s more than I should ask, I know, because it’s not a small commitment. But I have to, because it might make a difference somewhere, to someone.

If all you wanted to do was see if you matched me, then I absolutely appreciate the gesture. But save the money, because you get put in the national database anyways, and I can tell you, if they had told me someone out there was a match with me, but they were only willing to donate to one person, first, I’d be crushed. And then second, I would find you, hunt you down, and take the bone marrow out myself. With a spoon.

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9 comments

  1. […] the process, what’s involved, and all that jazz, well you’re in luck. I wrote about it, here, so click it and find […]

  2. Fritzi winter · · Reply

    Tony and Lauren, Will do whatever it takes…
    Much affection,
    Fritzi

  3. Talia Woolfe · · Reply

    Hi,

    I am already registered with the blood marrow registry. If you would like, I would be happy to seriously consider helping you by donating blood marrow to you.

    With my best wishes,

    Talia Woolfe

    1. If you’re already in the registry, it means that we are likely not a match, unfortunately. But thank you for the thought!

      1. Talia Woolfe · ·

        You’re welcome! Best wishes that you will find a match. Please let me know if there is anything I can do to help you more.

  4. Alfonso Perabeles · · Reply

    Lost a best friend to cancer. Anything, I can do to help. Get better.

    1. Thanks for the kind words.

  5. Thank you so much for your posts. You have no idea how helpful they are. Or maybe you do…anyway, thank you.

    Yvonne

    1. Thanks for the encouragememt. It’s always nice to hear that I’m helping in some way. 🙂

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