Category Archives: Doctors Visits

The Power of Prayer and The Good News

I’m doing well, thank you. Very well, as a matter of fact.

giggity

The most encouraging news came over the past few weeks as I extended the time between transfusions. 3 weeks between platelets and 2 weeks between red blood cells. That’s a good sign that my bone marrow is starting to actually make cells as the decline isn’t so rapid.

In the past few weeks, I’ve had this strong feeling inside that things were heading in the right direction, albeit with cautious optimism. This past week, I knew that I felt the best I’ve felt.

That’s of course, after I had 6 needle sticks last Wednesday for my transfusion until they could find a vein that still worked….

six-sticks

But I had a good feeling about today. I’d been praying really hard this past week, asking God for an ANC of 800. But I told God I’d take whatever he wanted. I was ready for 600. But He delivered with 1200!

#MOJO

Praise God. My ANC is 1200.  In case you’re wondering, that’s only 300 from ‘low normal’ for my neutroPHILs! Amazing news!

ANC

That coincides with the highest count of white blood cells I’ve had since January.  And my red blood cell count is the best they’ve been since returning home on April 10. Platelets are still pretty low, but the counts are holding steady.

Count-Von-Count

I can’t thank everyone enough for their prayers. It still amazes me to know how many people tell me they are always thinking about me and praying for me. Your prayers work! THANK YOU and Keep ‘em coming!

Matthew 18:20. “For where two or three gather in my name, there am I with them.” 

Even if we ‘gather’ on Facebook or Twitter.

not-twitter-follow-me

I’m convinced that God gave me this disease for a good reason and a purpose. In addition to bringing me closer to Him, I’ve been honored to hear so many people comment on how inspiring this blog has been. (To be quite honest, it’s more therapeutic for me!). And I’m so proud of the awareness we’ve raised for blood and bone marrow donations.

I’m very thankful for my co-workers at Hygenic/Performance Health in Akron Ohio, whom I’ve worked with for nearly 15 years now. 28 people donated in my name a few weeks ago. We are now at 85 blood and platelet donors. Please continue donating to save someone’s life!

mosquitobar

And in 2 weeks, I’m happy to announce that we will be having a Bone Marrow Donor drive at the National Athletic Trainers Association meeting in Indianapolis…a chance to reach thousands of athletic trainers and give them an opportunity to add their name to the “Be the Match” registry.

With my road to recovery being paved, my new motto is “Vivo Vitae, Datus Vitae” which is Latin for “To Live Life, To Give Life.”

I hope you choose to do both as well.


The Good News: God’s Got Dis

underdogWhen we last left our hero, his ANC (white blood cell neutrophil count, a sign of infection risk) was 510 at the NIH visit on May 6. Low normal is 1500. But the higher the number, the less infection risk. I’ve been very concerned and cautious about infections since that’s what kills most people with Aplastic Anemia.

I prayed a lot the week after my NIH visit that my ANC (white cell neutrophil count) would increase from 500 to 600. After all, I was told that I wasn’t responding to the treatment, so I obviously was a little worried.

Each week, I’d been asking my ‘spiritual leader’, my brother-in-law Kevin, to ask God specifically to increase my ANC level to 600. I was looking for a “sign from God” that everything was going to be OK.

Then my numbers came back the following week.

ANC: 500.

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Bummer.  Down from 510. Still no progress and still have to worry about infections.

When it came back at 500, Kevin said, “They may say it’s 500, but faith says it’s 600!”. That’s when I made the connection…

1 Corinthians 5:7 For we live by believing and not by seeing

This was a test of my faith! So I prayed again to reach the 600 level the following week. But this time, I told God that I was OK with this test and that I would accept whatever He wanted my level to be. “I know you have a reason for my disease and a plan for me,” I’d say to Him.

That week, I started feeling the best I’d felt since January when I was diagnosed. It was kinda eerie to me knowing that I was really not progressing in my blood counts or transfusion dependency. I still had trouble breathing with exertion ( a symptom of the anemia), but no real nausea.  I even had an urge to do some yard work outside last Sunday. I’d been avoiding it because of the risk of infection, still wearing my mask in crowded places.

house

But I felt God telling me, “It’s going to be OK. Live your life for me. Be patient, and don’t worry. I’ve got this.”

Then the results of my blood test came back.

ANC: 600!

(Oh, did I mention that I did my TheraBand exercises just before my blood test this time? Remember my experiment in the hospital?)

I was at Mary Bird Perkins outpatient transfusion center weekly getting blood and platelets. I usually get stuck by needles 4 times in one day as they try to find a vein that works. I think about Jesus being nailed to the cross as they squirm the needles in my veins, looking for blood.

Jesus_nailed_to_cross-793004Last week, my platelet level was still low, but still high enough not to need a platelet transfusion. While I still needed a red blood cell transfusion last week, having longer periods of time between transfusions is a good sign of progress.

I continued praying each day that God would increase my levels. Today, I had my weekly blood test.

ANC: 700!!!!

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That’s the highest it’s been since I was diagnosed in January! (Did I mention I did my TheraBand workout again before my blood test today?)

In fact, all my levels are higher (except platelets) than when I was diagnosed in January. In addition, I’m trying to go another week without platelets OR red blood cells! My counts seem to be stabilizing, although they remain low.

What a great sign of progress… but while we’re out of the woods, but we’re not out of the tall grass yet.

Then I did some math. I realized that in actuality, I was released from the hospital on April 10 after my infection, so the clock should have started ticking at the beginning of April rather than the beginning of February as they had calculated at NIH for my 3-month follow up earlier this month. That means that I would technically show a 3-month response by early July. So perhaps I wasn’t as non-responsive or ‘behind schedule’ as I thought. I’m on God’s schedule, anyway.

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

My ANC goal was 500 for my 3-month follow-up visit, which I hit. My goal for my 6 month follow-up in August is an ANC of 1000, and I have complete confidence that I’ll reach that goal if not 1500! I’m almost half-way there! Just have to keep up that TheraBand workout…

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

 

 

I cried today. You might too.

I cried today. There, I said it.

baby-cry

I try to show only the funny, tough, smart-ass guy that everyone knows as Phil. But today, here by myself at the NIH, I had a lot of emotions today.

It started this morning when I gave up 19 (nineteen!) vials of blood. Dracula would have been drooling. I think they took the last drops of blood I have left. That started the pain.

19 Vials of Blood in the Basket, 19 vials of blood!
19 Vials of Blood in the Basket, 19 vials of blood!

But the highlight of the day was when I met Dr. Neal Young, the nation’s expert in Severe Aplastic Anemia. I’ve been reading his research articles on SAA. I felt privileged to be here to be seen by the best doctor at the best place to be with this problem.  Wow, I’m a lucky man. (Side note: Turns out he was just in New Orleans for a hematology conference!)

But that didn’t make me cry as much as my 3rd bone marrow biopsy in a month. How many people can make that claim? I went into this one thinking it was no big deal after my previous 2 bone marrow biopsies in Baton Rouge; plus I thought these guys at NIH do this all the time, so no worries, right?

What-me-worry Mad image

Worst. Biopsy. Ever.

2 doctors, 1 hour.  This time, it felt like a cross between a dentist-in-training and a bad partner in manual therapy lab. That brought tears to my eyes.

Mental note: ask for conscious sedation next time.  Near the end, I said while wincing, “Doctor, How many did you say you do a day? I’m sorry but this is the worst biopsy I’ve had.” She apologized profusely.

But the funniest thing was the medical student who was observing had to leave the procedure as soon as they inserted the biopsy tool. He almost passed out! You would too if you saw this thing:

bone-marrow-biopsy-needles-70186-2886629

So after 3 hours on the table, I went to get up and pain shot through my sacroiliac joint and leg. Couldn’t walk. That meant a wheelchair ride to get a transfusion. I was overdue for my weekly transfusion of 2 units of red blood cells and 1 unit of platelets.

Stick #1. OUCH! Stick #2: Ahhh. Another successful venipuncture for my life-sustaining nectar.  And only 4 needle sticks today.

pincushion

Then the good news. I would be admitted that night. Mostly because my white blood cell count is so low that I’m critically prone to infections, but more importantly to get me treated.  And they will enroll me in the eltrombopag trial!

I’d been asking for Mojo since I found out I might be eligible for this trial last Friday. This is the 3rd time I’ve asked for Mojo and the 3rd time it worked! I’m very blessed to have so many friends and family supporting me. Thank You, Baby!

mojo

So, greetings from NIH Hospital Room 3-2404 in 3NE…Wifi included! Mission accomplished. (FYI, plants and flowers aren’t allowed for immunosupressed patients).

With that, I’ll leave you with a video from Rascal Flatts that will bring a tear to your eye. Listen to the lyrics: It hits very close to home for me. 6 chances in 10 it won’t come back again.

Most importantly, this song reminds me how thankful I am  that my children don’t have to go through this.

PS: A special shout out to Blaine & Cheri Efferson, Dr. Jay Greenstein, Dr. Barton Bishop, and Mrs. Jacque Barlow for their help in the past few days!