Thanks for a successful drive!

cookiemonster

We had a combination blood drive and bone marrow donor drive at United Blood Services of Baton Rouge, along with the Be the Match organization on Saturday, April 26. I’m happy to report that we had 71 sign in, and 54 donated either blood or platelets (or both!) and 6 more will return to donate this week. What a great turn-out! I was very humbled by the number of people we had (and I think we overwhelmed the staff!) Thanks to everyone for organizing, volunteering, and donating!

BloodDriveSign

You can check out photos from our drive on our Facebook page. I think Facebook was a big part of our success thanks in part to the last minute blitz by Kim Heard!

blood-kim

For those of you who couldn’t attend, please donate blood or platelets locally; you can also visit www.BeTheMatch.org to learn more about testing for being a donor. If  you would like to make a monetary donation, you can donate to the Be The Match organization through my donor site here.

You can also donate the the Aplastic Anemia Foundation here.

Meet Rachael

You may have seen that we had an additional potential bone marrow recipient added to our drive last week, Rachael Rossi Savario. She too has Aplastic Anemia, and lives locally. That’s quite amazing since the incidence rate is anywhere from 1 to 5 in a MILLION. And we have at least 2 here!!! (Something in the water here?)

Rachael

She couldn’t make it to the drive on Saturday, but I was able to friend her on Facebook, and we thought at some point we’d meet face-to-face, probably over an infusion at Mary Bird Perkins. (Meeting over cup of coffee would be better, though.)

As fate would have it, I ran into her this morning as I was going into the doctors office for my blood work, and she was leaving! She called out my name in the parking lot and we chatted for a few minutes as she was leaving for another platelet transfusion. What an amazing moment.

She was actually treated 2 years ago with the same treatment that I had (Horse Serum ATG & Cyclosporine) and had a full recovery. However, her platelet counts are low again and she’s in need of a bone marrow transplant.

As I’ve said, at our age, we have a 50-50 shot of the immunosuppression really curing the disease, and there remains a good chance I’ll need a bone marrow transplant as well.

That’s why it’s SO IMPORTANT to get into the bone marrow donor registry. Its FAST & EASY! Just visit www.bethematch.org for more information!

So, please add Rachael to your thoughts and prayer list. At this point, it’s in God’s hands, and the only way that works is through your prayer. And don’t forget to send your #MOJO!

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We got dis

In the beginning of my battle with AA, I used the slogan, “I got dis,” referring to the fact that I  was going to be able to handle this…by myself. While it’s important to be strong and proactive, I’ve learned there’s no way to go through anything like this by yourself.

got your back

“It takes a village.” Family and friends to support, help, and donate. Doctors and nurses to direct treatment.

But most of all, I learned that prayer and God are the most important players in this fight.

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.

Aplastic Anemia is such a rare condition that the medical community isn’t really sure how to treat it, particularly in someone my age.  Because of the rarity of the disease, the doctors just don’t know a lot about how to treat it like they do other things like cancer. The survival rate is much better in younger people, but the incidence is also higher. While I do all I can for myself (medication, exercise, avoiding infection), I know that this is really in God’s hands.

keep-calm-because-god-s-got-this

Rise of the ANC?

One of the most important things for me in this battle is to avoid infection, which is what kills most AA victims. The “ANC” is the Absolute Neutrophil Count, which is the marker for susceptibility to infection. Neutrophils are white blood cells that fight infection; the more you have, the less risk of infection. Low ‘normal’ ANC is 1500. There is a severe risk of infection with ANC less than 500; moderate risk at 500-1000 and mild risk at 1000-1500.

ANC

I’m happy to report that my level jumped from 300 to 500 last week, but was down to 450 today. That’s a great sign that the white blood cells and infection fighting neutrophils are on the rise. Now I ask that you pray for me to get to the 1000 level to further decrease my risk of infection!

Mask Humor

surgical-mask

With all this talk of infection, some of you may have seen that I have to wear a mask indoors. While I don’t wear it at home (as long as everyone’s healthy), I do wear it when I’m out to avoid any infection. While my ANC level remains below 1000, I think it’s a good idea to continue that, even though it’s not to convenient. So I came up with the top 5 things a mask is good for:

1. Keeping germs and allergens out, particularly during this allergy season!

2. Catching barf when you throw up and can’t get to a toilet or garbage can in time (yes this actually happened to me)

3. Curbing the stench of smelly bathrooms and waiting rooms.

4. Keeps me from biting my fingernails.

5. Having people keep their distance without having to tell them.

facemask

My Story

I added a page to the Bone Marinara blog, My Story, that gives everyone a quick summary of what I’ve gone through in case you’re new to the blog or just pressed for time. Either way, I think it’s a good read and quite amazing to think about what we’ve all been through and how things like this change our lives.

Peter 1:6-7 So be truly glad! There is a wonderful joy ahead, even though the going is rough for a while down here, these trials are only to test your faith, to see whether or not it is strong and pure.

Updated Donors

A final note: I’ve updated our donor list to reflect multiple donors, and would like to point out John Sommers, who has donated 10 units of platelets since this started in January! But I didn’t get the list of donors from the blood drive this weekend, so please let me know if I missed your name!

 

 

On this Easter Sunday

This Easter Sunday seems to be one of the most important in my life. It was a goal for me to be home from the NIH before Easter to enjoy the annual food-fest back home in Baton Rouge.

But there was something more in it for me this Easter.

Those who know me may know that I’m not the most religious guy. I have read the entire bible, and the New Testament twice, as well as several other theological books to really find my faith. I’m a confirmed Methodist, but haven’t been to church in years.

After my diagnosis, I approached this with my scientific mind. I hoped medicine and my own body, along with my efforts, would take care of me. I didn’t go through phases of denial, anger, bargaining, etc. I just told myself, “I’m going to battle through this.”

And that worked for me until I became septic on my return to Baton Rouge the first time.

I was in acute renal failure and liver failure, along with a very painful rectal abscess.  When the doctor tells you, “You are not day-to-day now, you’re hour-to-hour,” things change quickly in your head.

As I lay in the hospital in extreme pain, I found myself fighting for my life. I realized I wasn’t going to be able to do this alone.

I can do everything God asks me to with the help of Christ, who gives me the strength and power. Philippians 4:13.

Sure, I had lots of people telling me they were praying for me. I had entire congregations of several churches praying for me. People who didn’t even know me were praying for me. I was even blessed by the priest at the OLOL hospital with a relic of Father Seelos, a 19th century priest from New Orleans. It was quite humbling to have all those prayers coming my way.

I had my “spiritual leader”: brother-in-law Kevin, often leading my prayer efforts bedside and on the phone. I told him specifically what I needed that day. One day it was to reduce my pain; another to reduce my creatinine levels; the next to help my liver function.

Amazingly, the prayers were answered. Both my kidney and liver function improved every day. It took a little while longer for my pain to come down, though!

 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Philippians 4:5-6.

I was amazed and told Kevin about my internal conflict. He  explained to me the different between your heart and mind. “You believe in Jesus with your heart.” It’s about faith: belief that something will happen. That doesn’t come from your mind. Your mind has to ‘see it to believe it.’ You have to be able to separate the mind and the heart. Prayer and faith come from the heart, not the mind.

When your faith is tested, your endurance has a chance to grow…for when your endurance is fully developed, you will be strong in character and ready for anything. James 1:3-4.

That’s what I had been looking for.

Since then, I’ve prayed every day. I end my prayers as always with “In Jesus’ name I pray”.  This Easter weekend again reminded me of why we pray in His name as Christians.

As I watched the end of the History Channel’s “The Bible”, I was reminded of the Passion of Christ and the pain He went through for us.

 If you do right and suffer for it, and are patient beneath the blows, God is well pleased. This suffering is all part of the work God has given you. Christ, who suffered for you, is your example. 1 Peter 2:20-22.

I have always believed that everything happens for a reason. That reason is not always evident immediately, but it will be. It’s part of God’s plan.

For example, last year, we brought the family to Disney World for Easter holidays. I got airline tickets using my reward miles for the entire family (500,000 miles). The night before the trip, the airline canceled our flight. We ended up driving to Disney. While I was angry and disappointed at the time, I had this feeling that I’d end up needing those miles for something else down the road. Sure enough, I now use those miles to fly Angela to and from Bethesda.

I’m so thankful for all the friends and family that have continued to offer their prayers and help. And thankful to God for all He’s done in helping me through the toughest time in my life.

 

Remember: We’re having our blood drive and bone marrow donor drive THIS SATURDAY April 26 at United Blood Center at 8234 One Calais Drive from 8AM to 2PM. (Just off Essen and I-10). For more details, or for monetary donations for those who can’t come, visit our “Be The Match” webpage.

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What are you doing on April 26?

Yes, it’s true! I’m finally home after 2 months in the hospital. I’m celebrating 5 full days at home without infections, surpassing my previous record of 12 hours.

Overall, I feel pretty good. I’m back to working (i.e. sitting behind the computer, talking on the phone, reading & writing articles….pretty demanding stuff!), but I have good and bad days with fatigue and nausea. My body is still adjusting to the chemo medication.

For the most part things are going well. I’m so glad to be home to my own bed and better food, although we are all re-adjusting to a few new rules instituted because of my compromised immune system…like washing your hands, covering your mouth when you cough….you know, that complicated stuff kids never do.

When I got home, I was overwhelmed by the gifts and cards (as well as the bills and journals) that had piled up over the past 2 months. Lots of beer-related gifts, even though I can’t drink for at least 6 months while on chemotherapy! At least I have my 2 month AA (Aplastic Anemia) Chip now.

AA-2month

But I definitely can enjoy most of my favorite foods. As long as they are cooked. Fried fish, jambalya, etoufee, gumbo (while it’s still cold!)…it’s all good and appreciated more than ever. I even enjoyed the Cliff Bar (thanks Chase!)

mojo-bar

But the gift that I cherished the most was from my son, Andrew.  His class was doing a project for kids with cancer that had students write cards and put together strings of beads called, “Beads of Courage.” Andrew asked his teacher if he could do the same for me, and I was greeted with my own Beads of Courage made by his class as well as 47 hand-written cards from his classmates. I had to hold back the tears.

beads-of-courage

 

I was also amazed to return home to 34 donor cards from Our Lady of the Lake from friends and family that donated blood and platelets on my behalf.  That was on top of the 100 units my friend John Hisamoto collected in Tampa last month. How humbling is that?

But the need continues.

I have to have blood drawn twice as week and have transfusions on a weekly basis. Hopefully, that period of time will lengthen, indicating my bone marrow is back “on line”. The process will be slow, likely hampered by my month of septic infection. So I will continue to need platelets and red blood cells.

In addition, they have started to talk about a possible bone marrow transplant. At my age, the initial Horse ATG and cyclosporine treatment has a 50/50 shot of working. The next step would be a bone marrow transplant, but even initiating the process takes months. So we’re starting to look for suitable donors (“Matches”) to my bone marrow.

We are having a combination blood and bone marrow donor drive on Saturday, April 26 at United Blood Services in Baton Rouge, in cooperation with BeTheMatch.org. Special thanks to my sister-in-law Brandy McIntire for facilitating the drive and getting these great cards made (if you’d like some cards to distribute, let me know!).

BoneMarrowDrive

Because she did such a good job explaining it, I wanted to share with you what one of the co-organizers, my other sister-in-law Kim Heard said about being a donor:

“We have learned that one of the biggest obstacles BeTheMatch.org faces is overcoming the perception that donating bone marrow is a life threating, major surgery.   It is still a process, but 95% of bone marrow cases are done using the same machine used to donate platelets.  The procedure takes 3 hours, there is a medication involved (I believe it is 5 days) and the person will experience some side affects, but the experience is said to be mild in comparison to the gift of saving someone’s life.”

I go back to NIH in 3 weeks for another bone marrow biopsy (ouch!) and follow-up, with hopefully good news. You’ll obviously be among the first to know! In the mean time, I hope you have a great Easter and I hope to see you on April 26 at our blood & bone marrow drive.