Sunday, October 26, 2008

Donor Day in words....

Oh boy - where do I start........  Saturday was a day that had an incredible number of different feelings surrounding it way before it started!  By Thursday evening deep disappointment had replaced any nervousness.  I had called everyone on the list of people who had voluntarily signed up and only one guy said he would make it to the drive!  I was so terribly disappointed and sad too that it appeared that the day would be a waste of time.

I read late into the night on Friday so that my mind would not keep on working long after the light went off,  like the night before.  And it worked - I slept better than any baby ever has.....  On Saturday morning the sun literally shone so brightly that it felt as if the light was being forced into my brain.  I smiled and knew it would all be ok, no matter what.  By then I knew that my daughter, Lisa and her husband would be up here and they were both going to join the registry and my sister Kate too - and that already tripled the ‘only one extra person’ idea.

And so the day started on a much better note than the day before.  The Vein Voyager Blood bus arrived at around 11.30am with five very lovely, very capable young ladies with what appeared to be an unlimited supply of smiles and gentleness.  And Alta, the “Marrow Lady”  arrived and set  up her table full of forms, pamphlets and papers inside.

Dawn and Greg from Carolyn’s Hope arrived with Tyler, their six year old son - it was absolutely wonderful to have them as back up all day long!  They both had wanted to get on the Marrow Registry and donate blood and had waited for this drive to do so - awesome :)  A big thanks to both of you for everything - we really appreciate you and I hope that next time we have more time to sit down and chat.

Steven and Laura stopped by in a quiet time and I introduced him to those that were there and all the ladies in the Vein Voyager too.  I wonder just how deeply I embarrass this son of mine at times, but they did not run off quickly and after a while I told them to head out and get on with their day.  He is so good and gentle with me when I get on a roll and 'show him off' - its just lovely.

Right here I must put in a REALLY big Thank You to the ladies of Kays Kastles.  Their premises were perfect for the drive and the atmosphere was all open and sunny and bright.  They helped me on every level they could and were just simply great!

Slowly people trickled in, and the one little dark cloud that thundered by was because my sister Kate was royally ticked off as her iron was too low to donate blood!  But she did sign up on the marrow registry, which sent that cloud back into oblivion.  A good many people who donated blood also signed up on the registry which was double wonderful.  It was absolutely awesome to see people hunched over forms, spending their time and effort to make themselves available to possibly save a life.  

I tried to talk to every one of the new members of the Marrow Registry and tell them how much I appreciate their willingness to help.  All of those that I spoke wished so hard that they would ‘be picked’ to be a donor.  They all said that it would be incredible and an absolute honor.

I had hung a good many photos on the wall.... these were of people who are dealing with cancer in some form or another and sadly two photos were in memory of people who are no longer here with us - Adrian from the UK and Carolyn, Greg’s mother who could not find a match.  Another of the photos was of Dawn, a young lady who needs a marrow donor but has not yet found a match.  When the local tv news guy came up and I told him the stories of those on the wall - he immediately zoned into Dawn’s photo and it was she who got on our local news later that night.  I had written on her photo that she needs a donor.  I so hope and wish that Saturday will help her.

To see a face of someone so young and beautiful, with a sparkle in her eyes and yet fighting such a tough battle really put meaning into the drive.  I know what I saw in the eyes of those that looked at her - determination to do what they could to help either her or others in the same situation.

All those photos made the donor drive come alive.  All of you sat there with us with pride, a sense of humor and determination.  You showed us parts of your lives, your kids, mothers, fathers and husbands or wives, there were even some that had their donors with them too.  You showed us what is important in life and by doing this you helped increase the Marrow Registry by 15 people.  

Fifteen extra chances for everyone needing a donor.  I know its not as many as I would have liked....... that number is closer to 5000, but it’s 15 chances extra - thats wonderful!  And I know that all of those that signed up on Saturday will tell at least one other and so it will go on and on and one day maybe it will be a normal thing to do when we come of age - get on the register.

Alta,  from The National  Marrow Donor Program is wonderful. She was so easy to chat with, has lots of fascinating things to share and easily engaged with people who came in just for an ice cream and handed out information books to those who needed to think about joining.  It was wonderful to share the afternoon with someone so upbeat and cheerful and full of positivity.

The “Vein Ladies” on the Blood Assurance bus just seemed to have a blast all the way through.  Every time I went on board to get some photographs, there they were, full of laughter, joking and warmth and sometimes hanging out of the back windows chatting the the guys outside (see pictures below).  They really made everyone feel totally at home and even promised to sharpen a needle for me as I am a baby when it comes to those sharp things.  Well it turned out that I could not donate blood anyway as I had surgery while living in South Africa.  What a disappointment!  Ok, ok - I will admit to a slight feeling of relief at not having to get jabbed but what a pity that a surgery over 20 years ago would eliminate me from ever donating blood here.  I would have donated if I could - even had my I.D. ready.  I am already a card carrying member of the NMDP - that sounds so good!

So the day was a success - double digit donors and all.  19 blood and 15 marrow donors. It’s a day that has started many a conversation especially amongst the younger group that came to sign up and also has kindled some ideas in my head for a future donor drive. 

It was Adrian and his determination to do what is right, that got me off my butt to do this donor drive.  Yes, I could have done it because of Steven, but I had not yet done so.  Adrian definitely pushed me out of my comfort zone to do this.  I think that the idea that he started, the education of the younger generation, is what will carry all donor drives to true and great success.  Adrian’s Army is world wide, can be put into effect by speaking to just one more person, by holding a donor drive or by doing the many available things that can be done to spread the word about the need for donors.  Talk to just one more person.........

 Being out of my comfort zone while putting this donor drive together was scary, frustrating and disappointing at times..... but mostly it was wonderful!  There is nothing quite like spending a day surrounded by people who want to make the world a better place, who are prepared to go through some discomfort to make a difference and who do this with a wish that they ‘get picked”!  

A really big Thank You to everyone who signed up on the Marrow Registry or donated blood - you are true lifesavers!  Thanks to everyone that helped, supported and encouraged, listened to my fears and gripes over the weeks running up to Saturday. Thanks to those who sent me your photographs, to Kays Kastles, Amber from Blood Assurance , Alta and Carla from NMDP and The Vein Ladies!  You were all awesome and it’s you that made this happen.

Love and light


More than "just one extra"!

This is what its all about - Dawn is needing a match ASAP!
The local tv channel aired a quick bit about the donor drive and this is who they showed most of the time.  I just loved it!
Anyone that is not signed up - DO IT! You might be a match for her or someone else who needs it right now........

Alta - the "Marrow Lady".  What a lovely person she is - so easy to chat with and she had no problem grabbing the walk-in's and educating them.  It was great to see and learn from her.  We hung the pictures of people around the area she used to sign people up.
Great job, Ryan and Casey  :)                                                                          

 Lisa and Brian  - double signup.  Whooo hooo!

And then Greg just HAD to make a scene!  LOL

 James and Monica - another double signup!  Thanks you two :)

Blood and Marrow donor!  What a lovely attitude - this was a pretend grimace as he was giving his Vein Lady a rough time.....:)

Dawn donating blood after signing up on the Marrow Registry
Yet another donor.... He was on tv afterwards too.
Just 'cause she is so cute and she was there!

 More very special people - our Guests of Honor for the day:

Christine (in red) - a new member on the marrow registry and a blood donor too. Thanks Christine!  She is also one of the awesome ladies at Kay's Kastles who allowed us to use their place for this drive!  Deep thanks, Ladies!

 Brian in the blood seat - great job! :)

Talking about you, Lea:

Andre giving blood :) Thanks for cutting your sailing race short to do this!

Another Andre signing up for the Registry after giving blood  :)  Thanks!

Dawn and Greg - lovely people!

Greg, Dawn, Tyler and Carolyn's Hope.  You are doing an awesome job - keep it up!

Love the concentration - Greg signing up on the Marrow Registry  :)

The Vein Ladies taking a break.  I love this picture.  I can only guess at what was so incredibly interesting outside........maybe two guys and a dog? :)  ok - leave the dog out of it.......
These young ladies were incredible.  There was never a shortage of smiles to dole out, the sense of humor was lovely and I especially loved that they even offered to sharpen the needle for me!  A really big thanks to you all.

The Vein Voyager

Friday, October 24, 2008

Donor Drive tomorrow

Oh wow, where is all this worry come from?  I know it will be all it's going to be and no matter how many people we get to come in, it will be a success.  So why am I even feeling as if the gray hairs are sprouting madly all over my head?  

Here is the link to the article on Glamour.  Erin gave such a beautiful intro for me that I feel as if I need to do more!  Thanks Erin!  Just what I need right now....... :)  

I have a good many photos printed out to hang up so that people can see that being a donor really does make a difference to real people with real lives.  Thanks to everyone that so kindly helped in this way - I really appreciate that, and also that you shared your story with me.  

I will take photographs, of course, and will post them up soon too.  I am really looking forward to meeting Greg and Dawn.  I keep hearing what Greg's mom, Carolyn, had to hear and what Greg and his family heard too - "there is no match for me".  Lets hope that this drive tomorrow makes at least one less family hear these words.

Love and light

Friday, October 17, 2008

Happy Birthday, Steven!

A quarter of a century ago, my first child was born.........what an incredible experience that was. I remember looking at him and thinking, with a quiet chuckle, that although he was the most beautiful boy ever born, he also looked like a combination of my dad and ET.  

But now he looks just awesome.  :)

Happy Birthday, Steven
May it be the very best year for you yet, filled with love and smiles and a million wonderful memories made.
I love you and am incredibly proud of you.
ps - here is a gift for you.............the moon!

Wednesday, October 08, 2008

Just ONE extra person........

So now that this ball is rolling and there is no turning back and I have to absolutely make this drive the best it can be - my stomach is churning and I started getting 'freaky' about it being successful.  What if only a few people turn up?  What if half the people that committed, back out.  What if people just don't get it and .............well, it flops?  So many what if's.  Most of them coming in the late night hours.

 I shared this thought and worry with one very special lady, Lea.  And her answer opened my eyes......... "One extra person saved my life", she said.  Think about it.  
ONE extra person saved Lea's life;  
ONE extra person saved Shane's life;  
ONE  extra person saved Trey's life; 
ONE extra person gave Adrian long enough time to make a very real difference in so many lives; to mention just a few...
Just one extra person has saved, helped and lengthened lives all over the world.  Just one.......... 

What an absolutely awesome concept!  In today's world, so often I feel helpless, incapable of really making a difference - I mean a real difference.  It's not easy to raise funds, to raise awareness, to keep on talking about cancer when so many days I just want to bury it deep and forget that even the word exists!  It's not easy to convince people that getting on the marrow Registry and even being a donor is not the terrible torture that just the thought brings to mind.  None of it comes easily or naturally to me.  But Lea's words today, her reality, her life - all made possible by one single person....... wow.   This really lit me up and put it all back in perspective.  Of course I knew this before - but put so simply - well, that really made it sing.  Thanks Lea!

Simply put, I am in awe of all donors and my aim is to add one donor at a time to that registry.  Just one.  I guess it's like losing weight - one pound at a time.

This is how you can help.  I need your photos.  I need photographs that I can print out and hang on the windows and walls where the donor drive is being held.  It's inside a lovely ice cream parlor that has plenty tables and chairs to sit at and look at the wall and window space that we plan to fill with pictures of those needing blood, needing donors, going through transplant, been through transplant, and of course, the donors and the families affected by every aspect of this!  So, if you would like to make this drive more personal, more real - please send me your photos!  Make them family pics, single pics, hospital pics - any photos will help to show others just how this affects everyone dealing with this disease.  Send big files so that I can print them 8 x 10 size and send to:  I would really appreciate any and all photos.

One of our customers has a grandson, Hunter, going to transplant at Vanderbilt next week.  This little 12 year old has Aplastic Anemia and he has needed lots of blood to keep him alive over the past years.  Now it has come to the point where that is not working any more and he needs to get a transplant.  He has a donor, but his story made me realize just how important it is to be a blood donor too.  Another really easy way to help keep someone alive and another way to make a real difference in someone's life.

Remember - it takes only ONE extra person to make an enormous difference in many people's lives.  A whole community is affected by the help of one donor.  Talk to one more person, teach one more person.

Just ONE extra person.  I know just how much that one extra person will count if Steven ever needs to go to transplant..... There is no indication of this at all at this point, but I am always aware that everything could change in the blink of a test result.   This reminds me - the 'elephant' arrived yesterday morning - that's the PCR kit that will have it's tubes filled tomorrow and sent off for another view of where this disease is in Steven.  I have to say that he looks great, sounds great and is looking forward to a week on the Florida coast.  Lucky bugger! :) 

And here is the link to an article that was in our local paper today - look at page 6.

love and light

Thursday, October 02, 2008

Marrow and Blood Drive

On the 25th October, 2008 we are holding a blood donor drive in combination with a drive to get as many people signed up on the Marrow Registry as possible.  Normally there is a cost to join the marrow registry, but because we are doing this combination drive, the cost will be carried by Blood Assurance.  Wonderful, hey?

I want to get the word out firstly that to join the Marrow Registry simply m
eans giving a swab of saliva and then the data from that is entered in the registry.  The process of donating marrow is now mostly done via the arm, where blood is taken out, run through a machine that separates out the blood-forming cells and the remaining blood is returned to you through your other arm.  No drilling into bones, no bone removed and even if you do donate by actual marrow, which is an outpatient surgical procedure, you will not feel the pain - the anesthesia is goood, I hear :)

The recovery time after a donation is, in both instances, normally short and, in my opinion, the chance to save a life far outweighs any discomfort of either procedure.

But - back to the donor and blood drive.  I would love to make the benefits of donation, both marrow and blood, very real to every person who walks into Kays Kastles Ice Cream store on the 25th.  I want them to see the faces of those living because of a transplant, needing a transplant, because of blood and because of donors!  I want these faces all over that place and I would love for people to be able to talk to and even meet people dealing with different conditions needing marrow and blood and also the donors! 

I feel that being able to talk to someone who has been a marrow donor will alleviate many of the myths about this process.  So.............if you would like to help in this way, please send me a photo of someone you know that is dealing with this in any way - tell me whether they are needing a donor, already had a transplant, whether they regularly need blood or if they are a donor.  And if you are nearby, please come up and join us - we would love to meet you!  Greg, Rhonda - you still coming up? Pretty please..........:)

If anyone has any ideas, suggestions or anything that you think will make this drive all it can be, please email me and let me know.  This drive started off as one in honor of Steven and in memory of Adrian who is still making incredible changes in the education of people about donations, but now it has become more, much more.  This is a public blood and marrow donor drive - open to the public and for the public.  I still view it under the umbrella of Adrian's Army as it was because Adrian did so much that I got my behind out of neutral and got this ball rolling. In addition to Steven and Adrian being the main focus, this has now become a drive in honor of everyone dealing with the medical conditions that require blood and marrow in order to survive.  It's in honor of all those that fight this fight, their caregivers and supporters, its in honor of everyone that deals with this on a daily basis, in honor of those that have already saved lives by giving blood or marrow and in memory of those that have not survived - its because of them that so many of us do something positive to try to make sure that less people have to fight this fight.  

It's quite incredible just how much strength I get from others, other people with cancer, those that are cured, those that are waiting for that cure, those that love them and can only sit and wait and hope and those that are donor.  Those donors really do hold a special place in my heart.

And now I find myself rambling.  Just finished watching the Biden/Palin debate and needed to fill my mind with positive things.  Wow, did I just say that?  Cancer is more positive than politics??? WOW  What a good note to end the night on.

Love and light