Category Archives: What You Can Do

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.

Help!

I just realized it’s been a month since I last posted on BoneMarinara.com. I guess you can say, “No news is good news.” But I’ve been busy with a number of ‘firsts’…my first beer brewed since getting out of the hospital (Anemia Ale, of course) and my first 5K race (had to walk 95% of it)…and all this past weekend! And now I’m planning for my first trip out of the country, although my family isn’t too happy about that.

turkey-hagiasophiaThis week is the 6-month mark since I left the hospital. The doctors at NIH were looking at my blood counts 3 months after my initial horse-serum treatment and talking about bone marrow transplant because I wasn’t responding as they hoped. I always believed I was off schedule because of my sepsis, so I gave myself 6 months after April 10 (my discharge) to reach levels of a responder. (Oct. 10) I think I’m there.

While I’m not cured yet, today’s blood tests were very encouraging. I haven’t needed platelets in about 2 months! They are at the highest levels since my discharge in April (now 27; need to be at 150). My white blood cells are also at higher levels (now 2.8; need to be 4) and my ANC is 1400 (1500 is low normal). I still need blood transfusions, but the length in between them is slowly increasing (another good sign.)

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Everyone asks, “How are you feeling?” Well, I FEEL GOOD!

Everyone wants to feel good. Some feel good the ‘right way,’ and others feel good the ‘wrong way.’ (I’m sure you know what I’m talking about.) I’ve found that 5 simple things can make me feel good no matter what else is going on.

I pray each morning and thank God that I’m here. Recently, I’ve started to pray for these 5 things; the “Five H’s”: Health, Healing, Happiness, Hope, and Help. Today is one of those days when my prayers were again answered…I feel my 5H’s have been fulfilled today. My health is relatively good; my body is healing; I have hope; I’m happy, and am helping others.

So I want to write upcoming blogs on my 5H’s. Today is “Help.”

I’ve always enjoyed helping people. In fact, that’s one of the reasons people want to be a Physical Therapist like myself. (HINT: if you are applying to PT school, NEVER say you want to be a PT because “you like to help people”. That’s what everyone already knows!)

As you know, if you’ve followed my blog, I wanted to make my experience helpful to others who may suffer from similar illnesses, but also help anyone who needs a little motivation or inspiration. I can’t tell you how many people have reached out to me to share how inspiring my blog is to them and how it’s helped them to get perspective in their lives.

But I wanted to do more than just write a blog. I wanted to make a difference beyond that. So, we started doing blood drives…not just to help me, but to help others as well. Raising over 250 pints of blood this year in 3 states, I’m sure we’ve helped many people across the nation.

And the way I think I’m really helping is to increase awareness for bone marrow donation and get more donors in the registry. I have been amazed at how little people know the facts about bone marrow donation. Even though my own bone marrow transplant is on hold because my numbers are improving, I will continue to promote donation for the thousands of others who need a transplant.

Within the past month, I’ve helped with 3 drives, getting about 65 swabbed. Thanks to the LSU Gymnastics team, St. George Fire Department, and Most Blessed Sacrament Church Mens Club, as well as those who helped me like Ray Castle, Darrell Ourso, Dustin Yates, and Madonna Phillips. Since the Mayor of Baton Rouge issued his challenge of 250, we’ve been able to get 144 kits for Be The Match.

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“Help me help others.” I ask God to help me to do His work, whether that’s getting bone marrow donors in the registry or making time to write this blog. I am convinced His plan for me is to help promote bone marrow donation awareness. If you haven’t yet, please help someone else by getting swabbed for the bone marrow registry.

Isaiah 41:10 Fear not, for I am with you; Be not dismayed for I am your God. I will strengthen you. Yes, I will help you. I will uphold you with my righteous right hand.

And I’m happy to announce that I’ve almost reached my goal of $1000 BeTheMatch fund-raising, so if you’d like to help contribute financially, please visit my donor site at: http://www.bethematchfoundation.org/goto/bonemarinara

You can also help by donating to the Aplastic Anemia & MDS Foundation.

Pay it forward. No matter how busy you are, how bad you feel, or if you think you can’t help, you can! And you’ll feel better for it.

Oh, and don’t forget to ask others if you need help. That’s what we are here for. To help each other. It’s not a sign of weakness…it takes strength to ask for help. And I wouldn’t be here to help people today without the help of so many others…