BoneMarrowDrive

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.

12 thoughts on “What are you doing on April 26?”

  1. So glad you’re home and back to work. Just don’t overdo it!
    How sweet of your son & his classmates. Bet you didn’t really hold the tears back. ;-)

  2. Phil, so happy you are home. You are truly an inspiration as well as a great educator and I love your humor. It is my hope that we will be fortunate enough to meet you this Saturday, April 26th at United Blood Services. It will be my honor and pleasure to be there.

    Kindest regards,
    Madonna Phillips
    Community Engagement Representative
    Be The Match

  3. Great news, God Bless you n yours. I have a funny video I will send on email. It is how the Teurlings Catholic football team welcomes a pitching change by our opponents(who incidentally was St Michael’s on BR. Love ya bro!

  4. Phil–Great News!! Donna and I have been wondering about your progress. We want to reiterate the point on “donating is easy peasy”. We are both on the donor list and Donna has actually donated marrow a couple of years ago. The process is indeed easy…made even more so by the great folks who work for the Donor program. They hold your hand and answer ANY question during the entire process. Prayers from Cleveland.
    Don & Donna

  5. Excellent, I’m on it. Long-time blood donor, but have never registered for anything else. It’s so great to see y getting better, Phil!

  6. Phil, thank you for the BeTheMatch website information. Spreading the word and thinking about you a whole lot. I’m not a prayerful person (had some events that made me lose faith years ago–should let go of those, I know) but appreciated hearing about yours. You are not only a good scientific writer, but quite a talented blogger! Thank you for keeping us—those who care about you from afar—updated.

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