With all the Ice Bucket Challenge hype, I thought I’d first donate to the cause, which I did last week. ALS is a horrible disease with no cure that will require millions of dollars in research funding. The money this challenge will raise will literally be a drop in the bucket, even though it might bring in $100 million more dollars. One research project alone can cost millions.
I’m glad to see the increase in awareness for ALS. And even more amazed that some “FAIL” videos have been viewed over 7 million times! Of course, all these videos are now laden with advertising in an effort to make those posting the video money for themselves.
In my own efforts to increase bone marrow donor registrations, I also wanted to take advantage of this socialized media phenomenon to increase awareness for the need of bone marrow donors. So I created the “BoneMarinara Challenge.”
The recipe for Bone Marinara is:
Ketchup (representing red blood cells)
Mayonnaise (representing white blood cells)
Mustard (representing platelets…they really are yellow!)
I was doing a research presentation last week and discussing the outcomes or ‘effects’ of research studies. The ‘effect’ is essentially what happens to a study group based on some type of treatment. Sometimes, a treatment can do more harm than good. That’s obviously important to know.
I discussed the difference between positive effects (good outcomes) and negative effects (bad outcomes). I used a ‘speedometer’ to represent the difference between beneficial effects (positive), harmful effects (negative) and trivial effects (very little either way).
My friend and fellow researcher, Dr. David Behm commented, “You know, you can have a ‘negative’ effect that’s actually beneficial. For example, if you see a variable decrease after treatment, that might be a good thing.”
He was right! Just because something is negative doesn’t mean it’s harmful. Negative experiences are often still beneficial, even though we don’t always see it that way!
We’ve talked about how my negative experiences have been beneficial and given me purpose. But there are so many others out there who are in worse situations that me; and handle it just as well if not better.
Case in point. My neighbor, 2 doors down, Roxanne Green. Her husband Johnny is a pastor at Healing Place Church here in Baton Rouge. They have 4 little boys.
Roxanne was diagnosed with ALS (Lou Gehrig’s Disease) over a year ago. Bottom line: ALS sucks. No cure. Progressively debilitates your entire body, but your brain still works, and you can still live a while, but from a wheelchair.
Steven Hawkins has it. Steven Gleason, the former Saints football player has it. And it gets a lot more attention than Aplastic Anemia. Have you seen the Ice Bucket Challenge? My daughter Hannah did it on video the other nite. (Looking for a similar type of viral video challenge for bone marrow donation, by the way)
I started to think this street we live on is cursed with my condition, Roxanne’s, and several other medical issues on our tiny cul de sac. But then I realized, our street is actually blessed with wonderful people who face adversity and wonderful neighbors who are always there to help.
I wanted to share Roxanne’s and Johnny’s story with you. Watch this very moving video from them (Their part starts at about :21 minutes). So many great quotes to think about. Roxanne said, don’t feel sorry for me; “Be moved with compassion.”
Johnny said, “Let go of despair and hold onto hope.” Then he went on:
“God’s blessing in our life has outweighed the pain. Find the blessings in your life because great fulfillment is a weapon against despair and it leads us to hope.”
Powerful stuff. An amazing family, just 2 doors down. Green Willow Drive is definitely blessed.
It’s been an amazing 3 weeks since my last post. Sorry for the delay, but as you’ll see, there’s been a LOT going on!
The counts are increasing
Well, not really my blood counts…but, I wanted to say THANK YOU to all those who came out and donated over 60 units of blood and platelets at the Woman’s Center for Wellness drive, and a special thanks to my wonderful wife, Angela who coordinated everything with Our Lady of the Lake. That brings our donor count to over 300 units donated since January. MOJO!
Bone Marrow Biopsy #5
Last blog, I talked about how my counts were down and that I would be going to NIH for the ‘next step.’ That happened this past Tuesday, and of course, I had my fifth bone marrow biopsy. (Read about my previous biopsy experiences here!) This one was a little uncomfortable because I had to do it without sedation. But I gritted my teeth and it was done in about 10 minutes. My butt still hurts a little though…maybe a little Boudreaux’s? The doctors at NIH say there is some positive sign of a slow response (remember that I’m 2 months behind schedule!), so we will wait 1 to 2 months to see my progress and determine next steps for treatment. MOJO!
The next day, our Be the Match representative, Madonna Phillips, asked me to be at the mayor’s press conference on April 12. I said, “I’m happy to be a poster child, but I can’t be there then. I’m scheduled to go to NIH!” But I quickly called my friend Matt Williams, the morning anchor of the top rated morning show on WAFB, and asked if he would like to do a story on me to time with the mayor’s announcement. Without hesitation, he had everything set up and produced an amazing 4-minute video of my story and family here.MOJO! We even had a 6AM watch party at the Brewshack that morning! Wait, who’s that guy in the yellow shirt? (This story keeps getting better!)
MarrowQuest is in town!
That’s Steve Matchett who is doing a 2500 mile bike ride down the Mississippi River to promote bone marrow donor awareness (by the way, he’s 72 years old!) He blogs about his journey at www.marrowquest.org.
No, it’s not GalaxyQuest. But that was a pretty cool movie!
I just found out about Steve a few weeks ago through Jeff Haertling, who just happened to read my blog and sent me an email about Steve. I reached out to Steve to see what I could do to help and then put my network to work! MOJO!
He’s riding for the Hendrick Marrow Program. Yes, the famous race car owner Rick Hendrick, who had leukemia but didn’t need a transplant; yet he created a program with Be the Match to raise money and awareness for bone marrow donation.
Still doesn’t ring a bell? Ever hear of Kasey Kahne? Jeff Gordon? Jimmie Johnson? Dale Earnhardt Jr? They all drive for Mr. Hendrick!
My good friends and neighbors, Cheri & Blaine Efferson offered to pick up Steve in Mississippi, and house and feed him for 3 days so he could make the mayor’s press conference (with thanks to Darrell Ourso!) I was honored to sign his bike, which will be auctioned off after his quest ends. In true, south Louisiana tradition, we had everyone at the Brewshack for a jambalaya dinner and Bone Marinara Bracelet ceremony!! MOJO!
One of the highlights of these past few weeks was my annual research meeting (TRAC) for my company. I had been hoping to attend this event that I started 16 years ago, and made it a goal to attend 7 months ago. We had our meeting in Park City, Utah, and I had to get an extra bag of red blood to survive the elevation. But I made it and had a great time with my awesome wife and friends. MOJO!
One of the best parts of the meeting was when my boss, Ethan Pochman, gave me and my wife shirts that say, “Everyday I fight.” The same shirt that Stuart Scott wore in my last blog post. (Stuart Scott is a sports caster with ESPN battling cancer).
I tweeted about my story to Stuart Scott (who has 500K followers) and he actually replied. MOJO!
Bone marrow transplant is still my only option for a cure. But without a full match, the risk of complication is too great, so we are waiting and continue to transfuse regularly. Remember the book, A Purpose Driven Life? I read it a few years ago and it helped me to find a purpose for our life and God’s mission. I think I’ve found the purpose of my life and the reason for all of this.
In the past 2 weeks, things have happened so fast and so simultaneously that God has to be behind this. He wants me to promote bone marrow donor awareness. MOJO!
So you can see, there’s lots of MOJO going on here all at once… hundreds of blood donors, hope in my treatment, the mayor’s bone marrow challenge, my story on the news, Steve and MarrowQuest, facilitating my network, southern hospitality, achieving goals, leveraging social media, and finding a purpose for all this.
As I told someone today, my entire experience isn’t necessarily positive or negative, it’s enlightening. And hopefully helping many more people than we’ll ever know. Life is GREAT!
A recipe for education and inspiration…with a touch of humor