Results are in....... and Hero's!

Well, well...... now that I have stopped getting so 'frilly' while waiting for the pcr results, now they only take 2 weeks to come back, instead of the full and very long 3 weeks before now........

And they are.................... virtually the same again. Just a tiny hop DOWNwards to 0.19% on the International Scale. It's amazing that just that very small, tiny little difference in test results makes the muscles at the corners of my mouth to pull outwards and upwards without any thought and seems to open my breathing tubes at the same time. And I did not even know that I was tense.

So - another quarter has gone by and all is still on an even keel and again, the world feels lighter, the day brighter again, the sunset more beautiful and everything seems to be less jagged. Not that any of it was, but good news in the pcr department always greatly improves an evening for me :)

Many things float through my mind, sometimes driving me nuts and other times reminding me how good life is....... Yes, there are the dark and nervy times and yet they can only be recognized because of the good times in our lives. Thanks Cat, for reminding me! No matter how hard a day is, if we just open our eyes we cannot help but see some light.

There are newly diagnosed CML-ers all the time and their road is really scary but there are many good and successful stories; people living with cml and people surviving transplants too.. There are the good stories with this disease, its just that most people write when life is not 'normal' and stop when it all goes back to that new normal... This is good, but not so good for anyone newly on this cml road.

Today I have been thinking a lot about donors. They are such special people; people who sign up to save a life - on purpose with thought and time used. It is no accident that they are in the right place in the right time, no co-incidence, no luck. They save someone's life on purpose! Not only do they save a person, they save the family, the extended family, the friends and even the community. How awesome is that? How awesome is a donor........ That's not a question - its a statement.

Today I got an email and in it was a link to these stories of donors....

Tom’s Story: From Marrow Donation to "Extreme Makeover: Home Edition"

I joined the Be The Match Registry^SM in 2000. I’d heard about a local Colorado girl who needed a marrow donor. Unfortunately, she didn’t make it, but her story stuck with me. I researched where I could join the registry, then drove to Pueblo where I joined through Bonfils Blood Center, a recruitment center for Be The Match.

Getting the call
Two years later, I was called as a possible match for a woman, but she developed complications and couldn’t go through transplant. It was an absolute disappointment for me to realize I almost had the chance to help somebody out, but then I couldn’t.

In 2004, I received another call. This time the patient was a 29-year-old wife and mother from Illinois. I went in for further testing and I asked a lot of questions. I knew I was going to go through with the marrow donation –- it would be foolish and selfish not to. But I asked a lot of questions. I wanted to understand the science.

The donation experience
People ask me a lot of questions about how bad bone marrow donation hurt. But you are under anesthesia during the procedure. It hurts some when you are awake, but let me put it this way: I had the procedure on Thursday and was back at work on Monday.

On the day of the donation, I wasn’t worried about pain or discomfort. My one fear was that the doctors would say “You can go home; we won’t be going through with the marrow donation.” I just wanted to give the patient an opportunity to live.

And donating really wasn’t a big deal, in that the effort it took on my part was minimal. Yes, you can say I saved a life, but my part was just a little cog in a machine built by scientists and doctors.

Making contact with Joey
After the one-year waiting period, I learned my recipient’s name: Joey Stott. We talked on the phone and sent a few e-mails. Prior to contact with Joey, the whole experience was very rational. There was a logical progression in every step. When I got to talk to Joey, it all became very emotional.

All I hope for Joey is to have a great life. To have the opportunity to continue to be a wife, a mother, a daughter -– to have more time with her family.

So when I found out ABC’s Extreme Makeover: Home Edition was building Joey and her family a new home, I was happy to help with the project. I hope that when the episode airs November 15, more people will know about Be The Match and how easy it is to save a life and keep a family together.

October 07, 2009

Wilbur's marrow donation experience

Wilbur donated bone marrow through the National Marrow Donor Program, which operates the Be The Match Registry^SM. This is his story.

The opportunity to pay back
My wife works for the post office, and this was how we became involved. (Editor's note: The United States Postal Service's long partnership with Be The Match has added more than 47,000 donors to the marrow registry.)

But the reason for my donation goes back to before I was born. It hit me like a brick wall when I got the call to possibly be a bone marrow donor:

I've finally found a way to repay the person who not only gave me life, but also saved my life very early on.

My mother's choice
While pregnant with me, my mother was told she had developed a form of cancer. The doctor told her she could treat the cancer but the baby wouldn't live through the treatment, or she could bring the baby to full term but she would die because the cancer would be too far along. Without pause, my mother decided the baby would live.

As it turned out, the doctor was wrong and my mother didn't have cancer. Had she decided to have the treatment, I wouldn't have been born. Service to others, putting them first before her own needs -- that's how my mother, Mary E. Baughn, lived her life. (After 74 years and two bouts with cancer, Mary passed from this life to her heavenly reward.)

My choice
Second thoughts about doing this? Never entered my mind!

I hate needles and my family knew this. They all wondered how I would go through the "pincushion" phase.

Well, it wasn't that bad. I really never had a lot of pain, even after the marrow collection procedure.

Everyone I talked to at the National Marrow Donor Program, especially my contact person Cindy Hofkes, made me feel like I was the only person they were dealing with. The donation procedure at Miami Valley was a breeze, thanks to all the wonderful people there.

Only a few people get a chance to possibly save a life. Sign up! Be a match!

October 06, 2009

Luz’s Bone Marrow Donation Experience

Luz donated bone marrow through the Be The Match Registry^SM. (Luz is shown with her husband, Santiago, and daughters, Gloria and Grace, who all supported her through the donation process.)

Luz's donation story:
I decided to join the registry when our church was looking for a match for one of our pastors. I joined in the summer and by October of the same year I received a letter stating that I was a possible match for a patient.

Of course, there was no question in my mind about donating. I have two daughters and the girl that would be receiving my bone marrow was only seventeen.

"Seventeen, wow!" I thought. "She should be thinking about prom and graduation, not about whether she would find a donor."

I went back for more tests and it was determined that I was a match. I donated marrow.

My experience was hassle- and pain-free. Veronica -– my donor center representative -- was very professional and compassionate. I did some research on the internet and found that it was supposed to be painful, but I did not experience any pain or discomfort.

I donated on Wednesday and by Saturday I was back at work. I knew I was in God's hands. By being exposed to the idea of donating marrow, my older daughter found that she could be a volunteer courier, and she joined the program. It's her way of contributing.

Donating was an amazing experience and a little surreal. Imagine, being a match for somebody who is a total stranger. Wow!! Isn’t God amazing.

I hope that by realizing that this was a pain- and discomfort-free experience, others will be inspired to donate. I am thankful for the experience.

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How can you help? Here are three ways, just for starters!

Help save a life this holiday season

You may not be called as a donor this holiday season, but you can still make a difference. Here are three things you can do today:

1.	The easiest gift: Tell at least 5 friends how they can save a life.
2.	Add a note to your holiday letters about your commitment to Be The Match and the opportunity to save a life.
3.	Help us raise $1 million for patient assistance so more patients like Joey Stott can focus on healing.

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If any of you know or are a donor and would be willing to tell your story for this blog........ please do so! I would LOVE to hear from you....

love and light

from one very happy, relieved and smiling

Annie