Thursday, November 12, 2009

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 RegistrySM 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.

Tom_Wilhelm-marrow_donorGetting 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

October 06, 2009


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.
Send A Holiday eCard
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.


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

1 comment:

Shelly said...

I'm so glad I happened upon your blog! My husband was diagnosed with CML on March 20, 2009. We have 6 little girls-our last one I was pregnant with when we found out about his cancer-her name is Hope. I became a bone marrow donor a couple of months ago. It was an easy decision. I absolutely hate needles, but if I can help save someone's life I'll do it in a heartbeat. I just hope & pray that I'm a match for someone out there who needs it. Thank you for listing other CML blogs, I can't wait to read them & I'm sure my husband will love to read them too. Here is my blog-it's a blog about my family and since CML is now part of our family I blog about it also.