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.

A 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.

Spreading the Word: A Round of Thanks

It’s not fun to see my wife in pain with multiple myeloma, but whenever I start to feel alone in this struggle I think about all the people, groups and organizations who are standing by us and helping us to search for the bone marrow match Tracy needs. We are not alone, not by a longshot! If I were to name every single person who has buoyed us in some way in over the last six months, I’d have a very long list! Come to think of it, at some point I really should right down the names of every person standing behind us and give a hearty shout out of thanks. For today, I’d like to give thanks to some organizations that have stood behind us helped us in our search for a match.

Every day we are supported by the National Marrow Donor Program and its constant “Be the Match” drive online. Every day brings a new dose of hope that Tracy will find a match, thanks to all those with the program who are constantly working to bring new people into the National Bone Marrow Registry, any one of whom could be her match.

A big, hearty, greatful thanks also goes out to the Ohio State University Department of Emergency Medicine in Columbus, Ohio, Adena Regional Medical Center in Chillicothe, Ohio, and Dr. Trudy Singzon and the Asian American Donor Program in the San Francisco bay area of California as they mount bone marrow registry drives. They could help Tracy, and together they’re sure to help someone in need.

Balitang America, the Diocese of Columbus, the Commission on Filipinos Overseas and Totem for sharing news stories online and offline about Tracy and the need for people to join the bone marrow registry. Every story you have shared about Tracy multiplies the effect. You have done so much more than we could do alone.

Finally, a broad smile to Midcoast Family Dentistry, a wonderful group of people who have taken care of my family’s teeth for years, who just delivered a basket of warmth and kindness to our family.

Thank you to everyone who has heard of our struggles and helped us and reminded us that there are so many people in this world who care. This means so much to me, and I’ll never forget your kindness.

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