I get knocked down, but I get up again

It’s been a little over a year since my diagnosis of Severe Aplastic Anemia and my treatment at NIH. I just had my one-year follow up and bone marrow biopsy number 6 at the NIH last week.

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My 6th bone marrow biopsy in February 2015

 

Those biopsies never get easier. It’s been a week and I’m still a little sore. But overall, it’s not that bad. I did my regular 3 mile walk the next morning with a big bandage on my butt!

MyButtHurts_Fullpic_1The doctors at NIH are pleased with my progress, considering me a “late responder” to the treatment. My blood counts, though still low, are steady or slowly increasing…but the most important thing is that I haven’t needed a transfusion in 3 months! My neutrophil count is above low normal at 1700, platelets are 35000 (need 150000), and hemoglobin remains 9.9.

Life is pretty much back to normal; with the exception of my endurance, I’m able to do most everything again. Like eat sushi! (I’m still staying away from contact sports and raw oysters though!)

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I heard this song again on my iTunes last week. Music has always been important to me, but now I listen for the meaning to the words in the song. Watch the Tubthumping music video on YouTube.

“I get knocked down, but I get up again. You’re never gonna keep me down.” from Chumbawamba’s “Tubthumping”

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In the past few weeks, I’ve gotten some amazing news. I’ve heard of 7 people from my bone marrow donor drives that were potential matches, including 3 from the LSU athletic training drives we did last fall, which is going to be a nation-wide program for Be the Match!

LSU-BTM-driveBut the one that makes me the proudest is my cousin Daniel Sommers, who was a perfect match for a bone marrow recipient he’s never met. Daniel got swabbed at my first bone marrow drive last year, and donated his stem cells a few weeks ago in Dallas.

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70% of bone marrow donors are unrelated. All it takes is a quick swab to get in the registry. If you are a perfect match, 75% of the time, all you do is donate stem cells just as if you were donating blood!   If you are between 18 and 44, please join the registry through www.bethematch.com. If you can’t register, consider donating to Be the Match.

And just today, my local friend with Aplastic Anemia, Rachael Savario, who received the same treatment as me, posted on Facebook that her blood counts are now normal! And I share her call for others to continue donating blood and platelets that saved BOTH of our lives! Many people with other conditions like cancer need blood. Please donate blood or platelets if you can!

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As you know, I wanted to make this a positive and inspiring experience for everyone. Everything happens for a reason. My Aplastic Anemia and sepsis has made me a different person. We’ve increased awareness of Aplastic Anemia, added hundreds to the Bone Marrow Donor registry, raised money for AAMDS and Be the Match, and collected many pints of blood and platelets. And so many people have seen the power of prayer work!

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Even though I’m feeling good, I will continue the fight. I still have Aplastic Anemia, and probably always will. I will continue to get more bone marrow donor registrants and blood donors. I will continue to share my story. I hope this continues to give inspiration and hope to others who need help.

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Fight. Donate. Pray.

#Mojo

 

6 things I learned in 2014 and what you can do in 2015

2014 was the worst of times, and the best of times (with apologies to Charles Dickens). While 2014 really sucked in terms of my health, it turned out to be a great year for me, my family and friends, and many others whom we may never know.

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Reflection in a new year should also remind us of what we’re thankful for. We should always be thankful; not just at Thanksgiving! So, I wanted to reflect on what I learned in 2014, and share my thanks with the hundreds of people who helped me this year.

I learned a lot in 2014, and we actually did many good things as a result. Things that weren’t on my original list of resolutions. God threw me a curveball, and I hit it. Maybe not a homerun, but at least a triple.

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One of the best movies ever!

Although I had already made my 2014 resolutions, I made another resolution on January 7, 2014 when I found out I had a life-threatening condition…which then got worse with the sepsis. Even though I didn’t have the confirmed diagnosis on Jan. 7, I knew that I was going to make something good come of this ordeal…. Although I couldn’t imagine what it was at the time. God had His plan.

“It’s not what happens to you, but how you react to it that matters.” (Epictetus, Greek Philosopher AD 55-135).

Ever hear the saying, “Make chicken salad out of chicken sh*t?” What if we all resolve in 2015 to turn bad situations into good ones? Learn from our experiences. Educate others. Help those in need. Make good.

The best Chicken Salad in the world is at Calvins
The best Chicken Salad in the world is at Calvins

I learned a lot last year about things I probably would never have known; and if you’ve followed my story, I guarantee you learned something new as well. While I never wish my experience on anyone, sometimes it takes bad situations to create change for the good. Someone once told me, “Cancer is a beautiful gift wrapped in a very ugly present.” I look at the influence the late Stuart Scott had on me and millions of others in his battle with cancer.

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RIP, Stuart. Boo-Yah!

 

1. I learned that patients that suffer from rare diseases like aplastic anemia are at a disadvantage. Especially when they don’t know what causes it; if they don’t know the cause, how can they know the cure? Not-so-rare diseases like heart disease or cancer get lots of funding and research, as well as a lot of attention from the pharmaceutical companies. These drug companies obviously aren’t going to invest a lot into research for a disease that only affects 5 in a million people per year. I’m thankful for the AAMDS organization that provides support for patients and families of bone marrow failure patients. It’s important that people are educated about rare diseases and that they help fund these associations that support patients and their families.

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2. I learned that the National Institute of Health (NIH) in Bethesda is the best place to be if you suffer from a rare or complicated diagnosis. The NIH is a pure research hospital funded by your tax dollars. Find out if there are any research trials going on at the NIH or other hospitals by visiting www.clinicaltrials.gov. Not only did I get the best treatment, but I wanted to participate in a research project that could help others as they look for a cure. I’m thankful for the doctors, nurses, social workers, therapists, and everyone that helped save my life. Rather than just have cold water poured on you, support research for a cure by donating or volunteering.

My doctors and nurses at NIH after my horse serum treatment
My doctors and nurses at NIH after my horse serum treatment

3. I learned how important blood and platelet donation really is. It’s been a year since I had my first blood and platelet transfusion. I used to give blood many years ago, but stopped. I never really knew how many people rely on transfusions like cancer patients, whose bone marrow can also be killed off in the process of chemotherapy and radiation (like Robin Roberts). Through efforts of family and friends, we raised over 200 pints of blood and platelets at 5 blood drives across the country. I and countless others rely on blood transfusions to live. I’m thankful to everyone that donated their blood and platelets for me. Remember that January is Blood Donor month, so please donate blood or platelets this month if you can!

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4. I learned that bone marrow donation is not what I thought it was, and I’m sure you did too. A matched sibling is the best hope for a successful transplant; but 70% of transplants are from un-related donors! Even though I don’t need a transplant right now, I want to continue raising awareness and adding to the registry. We all know how critical bone marrow transplants are, but I didn’t know much about the process. Once I found out how easy it is to get on the registry (it only takes a simple mouth swab), I set out to get as many new registrants as I could. We’ve added over 300 donors to the registry this year through drives at LSU, St. George Fire Department, and the NATA and Sports Physical Therapy meeting. And we’ve even had 3 matches from our drives! How cool is that? I’m thankful for all those who registered, but more importantly to those who helped organize these drives around the country. If you are between 18 and 44, please join the registry through www.bethematch.com. If you can’t register, consider donating to Be the Match.

We added over 40 firefighters to Be the Match from St. George FD
We added over 40 firefighters to Be the Match from St. George FD

 

We signed up over 100 athletes at LSU on the Registry
We signed up over 100 athletes at LSU on the Registry

5. I learned that faith, friends, and family are the key to getting through rough times. I believe in the power of prayer. I can’t tell you how many people were praying for me this past year. I continue to hear stories about how people I barely know encouraged their entire congregations to pray for me and continue to pray for me today. I always tell them, “Thank you…your prayers obviously worked!” I have added several people to my daily prayer list as well, and I pray every morning before getting out of bed. I can attest to the fact that prayer works. I’m thankful for the many people who prayed for me and continue to pray for me every day. Remember those in need in your thoughts and prayers, and pray every day.

One of my physical therapy friends had her children praying for me every day. When she told them that I was doing better, this is what they said: “I’m glad Mr. Phil’s doing better; the angels must not need any TheraBand in heaven yet.”

I couldn’t have made it without my BFF Angela

6. I learned that writing this blog is as much for you, the reader, as it is for me. I’m happy to hear of the positive results from my blog, BoneMarinara.com. We had 24,000 views in 2014. So many of you have commented on the site, via email, and to me personally how inspirational the blog is…with a little humor. That’s what I set out to do and that’s what keeps me going. It’s hard to write a blog with content worth reading. As you can see, I’ve slowed to about one post a month. It takes me about a week to pull a good blog together like this one, and it never ends up the way I thought when I started. It’s always better. (Kinda like me J) I’m thankful for those who read and share my blog to help support and educate others.

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Oh, and how am I doing, you may ask. Well, I’m coming up on 8 weeks between transfusions, which is the longest I’ve gone, and that’s a good sign. My platelet count is as high as it’s been (30) and my neutrophil count is low normal (1500). My white and red cells are still quite low, but I believe my daily walking helps (thanks to my walking buddies!) Exercise is Medicine!

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Our friend Steve Matchett rode his bicycle down the Mississippi River for Bone Marrow Donor Awareness

So, what are you thankful for? What are you prepared to do in 2015 to #MakeGood?

As for me, I’m looking forward to bone marrow biopsy #6 in February at the NIH.

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Till next time

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#MOJO baby!

 

#GivingTuesday

If you’re like me, you occasionally give to charities that you think are worthy. St. Jude. March of Dimes. American Red Cross. Makes you feel good. Helps People. Tax deduction.

I’ve never been very philanthropic (simply because I haven’t had much extra to give), but I do consistently donate money to charitable causes. Angela and I have always been fond of St. Jude, and donate regularly.

But this year, I learned of 2 new charities that need your help.

Obviously, www.BeTheMatch.org has pretty good visibility in the public with their celebrity endorsements like Robin Roberts, who is a bone marrow recipient. When you think about it, Be The Match covers a lot of diseases like leukemia, cancer, sickle cell anemia, and yes, aplastic anemia.

abc_gma_psa_120927_wgI’m fortunate enough not to need a bone marrow transplant at this time as my bone marrow is recovering slowly. But I became aware of the need for donors, the public misconceptions, and how EASY it is to be in the donor registry with just a mouth swab! With friends like Ray Castle and countless others you’ve read about here, we’ve added hundreds to the bone marrow registry this year.

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It costs $100 per donor to add donors to the registry. So I’m asking that you donate whatever you can to Be The Match through my personal site here. They never turn away donors or recipients.

But I wanted to point out a smaller charity that is really special to me. The AAMDS: Aplastic Anemia & MDS foundation. If you haven’t donated to them yet, and you follow my blog, I’m asking that you take a moment to donate what you can to this organization. While everyone knows that Robin Roberts needed a bone marrow transplant, did you know she had myelodysplastic syndrome? The “MDS” in AAMDS!

Through the efforts of AAMDS to support research and education, I know that they helped save my life. And they provided me with the information I needed to learn about Aplastic Anemia, which ultimately led me to the NIH clinical trial. Because the diseases are so rare, you can imagine that they need all the help they can get.

Today is known as #GivingTuesday, devoted to fund raising for different charities…following “Cyber Monday” and “Black Friday”. Please give what you can to AAMDS and BeTheMatch.

Thank you.