Category Archives: Matching

Better Get a Snap

Tracy was frosting a birthday cake for our son this week; he’s turned 16.  She put care into it, picking out colors, fashioning a rainbow, adding little dots here and there on top of a generous layer of chocolate.  As she finished, I pulled her camera out and said, “Wait.  I’d better get a picture of you and the cake before it’s all eaten up.”  “Why? I mean, it’s just…” she began.

Tracy with Noah's CakeA pause.  A mutual glimpse.  Understanding.  Then she nodded as I said the words, “you might not be here for his next cake.”

Tracy’s made it out a year and nearly two months since she was diagnosed with multiple myeloma, a deadly blood cancer.  Only half of people with myeloma make it out five years before they die.  She still has no match for a transplant of bone marrow cells from a healthy donor, the only treatment that can cure this disease.

I’m writing this message for the young adults out there who are falling in love.  Maybe you’re thinking about children.  Maybe it still feels like it all will last forever.  Maybe you and that special someone are fantasizing about growing old together.  Maybe you’re making those sweet jokes, wondering how you could ever raise a teenager.

Now realize that maybe you won’t get all that together.  Maybe the special he or she in your life will be taken away by myeloma, or leukemia.  It happens.  Or maybe it will be your friends, that fun couple you double date with, who will have that loss.

Feel the pain for a moment.  Then brush it away and do something useful.

There are two very practical things you can do about all this, right now, that are simple, quick, painless and absolutely free (and I remember how important “free” is at your age).

  1. Go to Be The Match, a website of the National Marrow Donor Program, and request a free kit in the mail.  You’ll send back cheek swabs that will be profiled for a small handful of genes indicating the sort of sick person with whom you might match in the future, for whom you could at some point in the next 25 years provide life-saving marrow cells.
  2. Get 5 friends to follow these two steps.

It’s like a wonderful insurance policy, but only if everyone does it.  The person you love has a match out there somewhere, and if you tell 5 people, and those 5 people tell 5 other people, and those 25 people tell 5 people, and those 125 people tell 5 people, then you have just added 625 new matches to the registry.  That will save someone’s life, someone’s love, someone’s future.

Save the future.  Be The Match.

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PenBay and Adena Donor Drives

Two days ago there was a stem cell donor drive here at PenBay.  We had a local representative of Be The Match with us, and we signed up just over 20 people to the registry.  Thank you to everyone who helped!

Yesterday there was a stem cell donor drive at Adena Medical Center in my hometown, Chillicothe, Ohio.  This was organized by my amazing mother.  You might remember that she helped organize my sister’s wedding two years ago.  It turns out she is a wicked good event planner!  The Adena drive was a smashing success.  My entire family was there swabbing people, and a representative from Be The Match was there as well.  The bigwigs of the medical center did ceremonial swabbing.  These are my Dad’s old stomping grounds, so Mom assigned him to the greeting table, and he socialized with his old colleagues all day long.  Mom said there were nurses from the OR who said things like, “Dr. Jalbuena!!!  When are you coming back?!”  They signed up just over 100 people.  Mom called me afterward full of spirit, love and joy at the connections she made and reaffirmed there.  Thank you so much to everyone who worked on this!

A reporter from the NBC affiliate in Columbus was there as well, and they aired quite a long piece on the 11 o’clock news last night.  You can watch it through this link.

Next up: donor drive at the James Cancer Center, Ohio State University Medical Center, Thursday, February 5th, 11am to 6pm.  Amazing and thank you!

As one Window Closes for Tracy, we Look for Another

Last week, we got some rotten news about Tracy’s health.

In November, a detailed PET scan showed that chemotherapy had stopped all observable cancerous activity in Tracy’s bones. This was great news, because the complete response meant that Tracy could receive a donation of bone marrow from a match in the National Bone Marrow Registry. We found out a bit later that Tracy’s one match was ineligible to give, and that was depressing, but we took solace in the news that the match would become eligible to donate again in a year’s time. If Tracy could just stay in her current state a complete response for a year, she could get a transplant then…

… but over Christmas break, she started feeling really sore and nauseated, and on top of that her bones started hurting her more. The doctors in cancer care ordered a new bone scan with a radioactive dye to show places in her body where cancer might be active. They found active tumors in her skull, shoulders, vertebrae, ribs, and one leg. It’s all back, just two months after a complete response, and just four months after she started chemotherapy. This means that her cancer lines have evolved resistance to her chemotherapy agents very quickly. It also means that if we found a match today in the National Bone Marrow Registry, Tracy would be ineligible because they don’t perform transplants until a person’s cancer is under control. That window has closed.

We need to open a new window. Tomorrow, Tracy’s going to “receive a port” — a medical euphemism for an operation in which doctors will put a permanent line connecting her blood vessels to a hole just under her skin. This is an acknowledgement that Tracy’s chemotherapy will be ongoing, because a port is usually put in to allow ongoing access for frequent blood tests and the administration of drugs. In two days, Tracy is going to start a new cocktail of chemotherapy agents, including the harsh drug carfilzomib. If this new cocktail works, and if we can find a match before the new cocktail stops working, Tracy can still get a bone marrow transplant … a possible cure.

That’s a lot of ifs, but we’re at the point where any possibility is better than none, and any increase in the size of that possibility is something we can hold onto.

Please help us kick up Tracy’s possibilities a notch. If you are 18-44 and healthy, would you take a few minutes to join the National Bone Marrow Registry? If you aren’t in that set but you know some people who are, would you share this link that lets them know how they can join?

I know I may sound like a broken record, but a reminder: it’s easy to join. It’s painless to join. It’s free to join. And you or someone you know could be a real, honest-to-goodness hero for someone in need.

Thanks.

~ James, Tracy’s husband

Why Should You Join the Bone Marrow Registry? Look Around You and Do the Math

Tracy Jalbuena in the Western Maine mountains, July 2014Here on this website, we’ve been writing personal appeals in the hope that you’ll help Tracy Jalbuena find a bone marrow donor who is a match with her human leukocyte antigen (HLA) type.  Someone willing to donate bone marrow stem cells could save her life and cure her deadly multiple myeloma.

I know Tracy as my spouse.  She’s the love of my life.  I know you’d love her if you met her.  She’s a life worth saving.  That’s what drives me to write this appeal.

But what if you don’t know Tracy?  Why should you bother joining the National Bone Marrow Registry if you don’t care two hoots about this somebody named Tracy Jalbuena? There’s a good reason.  Just look around you and do the math.

According to the National Cancer Institute, 0.7% of people will be diagnosed with the deadly blood cancer multiple myeloma at some point in their lives.  0.7% may not sound like much, but let’s put that in perspective relative to the population of the United States, the country where Tracy lives.  As of December 2014, the U.S. population stands at 320,000,000 people.  0.7% of that many people is 2,240,000 people.  At some point in their lives, 2.24 million Americans alive today will be diagnosed with multiple myeloma.  That’s a lot of people with multiple myeloma, a disease for which the only possible cure is an allogeneic transplant of bone marrow stem cells.

So what?  Well, first of all, maybe that person in need will turn out to be you.  By encouraging the people around you to sign up for the National Bone Marrow Registry, you could save your own life at some point in the future.

But of course this isn’t just about you, just as it isn’t just about Tracy.  Think about all of the people you know.  Social scientists have figured out through repeated research that the average person is acquainted with 290 other people.  These are people who you can recognize by sight or name and who you know how to get in touch with.

Imagine those people and ask yourself:

If you could save the life of one of these people you know, would you do it?

What if it were easy to save that person’s life?  

What if it didn’t cost you a penny?

This is not a hypothetical question.  Just do the math.  Of all people alive today, 0.7% will be diagnosed wth multiple myeloma and face the need for the only cure they can get.  0.7% of 290 people is 2.03.  The chances are that two people you know by face or name today have developed or will develop multiple myeloma.

And that’s just the numbers for multiple myeloma.  Did you know that bone marrow stem cell donation saves the lives of people with many more diseases?  They include:

Chronic lymphocytic leukemia (CLL)
Chronic myelogenous leukemia (CML)
Hodgkin lymphoma
Hurler syndrome
Krabbe disease (Globoid-Cell Leukodystrophy)
Metachromatic Leukodystrophy (MLD)
Myelodysplastic syndromes (MDS)
Non-Hodgkin lymphoma (NHL)
Severe aplastic anemia
Severe Combined Immunodeficiency (SCID)
Sickle cell disease (SCD)
Wiskott-Aldrich syndrome (WAS)

People suffering from these diseases are everywhere.  Chances are, you know more than one person who will be hit by one of them.  And you can save their lives.

Why wait?  It’s easy — just fill out a request at bethematch.org and get a free cheek swab kit in the mail.  Sending a sample back in is incredibly simple and painless — you just rub four cheek swabs on the inside of your cheek and put those swabs back in the mail.

Getting tested doesn’t cost you a dime if you’re in the prime target range of 18-44 years of age for health bone marrow.  The National Bone Marrow Registry picks up the expense.

Donating bone marrow stem cells doesn’t cost you a dime either. If you end up being a match, the National Bone Marrow Registry and the health insurance company of the person who needs a transplant will pick up travel costs, lodging costs and medical costs associated with the transplant.

You could be a hero, and not just for someone like Tracy Jalbuena who you don’t know.  Look around you now.  Think about those you know and love.

Now stop thinking and do something about it.  Take five minutes to join the National Bone Marrow Registry.  You have my deep, personal thanks right now.  You might be surprised at who will thank you in the future.

What Cures Multiple Myeloma… Our Kids’ Many Answers… and the Truth

Our family is many things, silly included.  When my beautiful wife Tracy Jalbuena fell ill with the blood cancer Multiple Myeloma, we started putting together videos to call for help. When we asked our son and daughter on camera what could cure Multiple Myeloma, we weren’t surprised to hear something other than the literal truth.

In this video, our kids share their ideas for what might cure multiple myeloma:

The uncomfortable truth we leaven with our fun: the only option with a chance for a cure is an allogeneic transplant of bone marrow stem cells from a donor — a donor who must be a near-perfect match for Tracy.  Most people find a match in the National Bone Marrow Registry, but because of Tracy’s multiethnic heritage her bone marrow type is rare.  There is currently no match available for Tracy.

We’re out of options… unless you or someone you know steps up to the plate, joins the Bone Marrow registry and turns out to be the one — Tracy’s match.

Would you like to be a lifesaver?  To give it a shot, all you have to do is head over to a website called bethematch.org and sign up to be tested for the National Bone Marrow Registry.  It’s easy, it’s painless, and for people aged 18-44 (who statistically have the healthiest marrow) it’s absolutely free.  You can even do it by mail.

Here’s the best part — even if you don’t turn out to be the match for Tracy, you could end up being the match for someone else.  There are thousands of people who need a match to save their lives.  You could do so much good with so little trouble to yourself.  Are you in?  Will you do it?

Even if you can’t or won’t send a sample in, please share this video with your friends, your family, heck even your archnemesis if you think it would be helpful.  And if you can manage just a few moments — please, Be The Match.  Thank you.