Be the Match!

If you know me at all, then you know how much I urge people to join the marrow registry at bethematch.org. That simple first step of swabbing inside my mouth eventually led to a lifesaving bone marrow donation for a young boy with leukemia.  If you are already on the registry, bravo! You've done your part.  If you're not on the registry, what are you waiting for?  You could be someone's cure.

In addition to joining the registry, supporting Be the Match financially is also important. Donated funds go toward covering the cost of the donation procedures, helping transplant recipients with costs that their insurance doesn't cover, spreading the word about the registry and helping it to grow, and furthering life-saving research.  If you've got a few dollars to spare this month, please consider donating on behalf of myself or my team for the event in Dallas on March 7th.  With your help, we can save even more lives. I'm so proud to have recruited 30 people to be on my team this year! It should be an awesome day.

Bone Marrow Recipient News

The mandatory waiting period after donating bone marrow finally lapsed in June, and I was able to make contact with my recipient's mother!!  Here's a snippet of her email to me:

"He is doing very well!! He turned 12 last month! I cannot tell you how much we appreciate what you have done for our family, and thank you for getting in touch with us."

Her words warmed my heart.  I've often thought of the boy I donated bone marrow to, and I really, really wanted to know if he was okay.  To hear that he made it to another birthday, and is actually doing well, is probably the best news I have heard in my life.  I'm friends with his mom on facebook now, so I've been able to see tons and tons of pictures of him, and even follow the bone marrow donation journey from his side of things.  Please consider signing up to be a donor at www.marrow.org.  You could save a life!  Want proof?  See the picture below.

 How sweet is this face?

Patience Young Grasshopper

So I got all excited last week, thinking I would be making contact with my bone marrow recipient in the near future.  I had filled out the consent to release information form and thought we were good to go.  Wrong!  Turns out the one year waiting period restarts when you make an additional donation.  The bone marrow procedure happened last January, but then in June I donated white blood cells to the same boy.  So, they are going to make me wait until next June.  Boo!  :(   

I haven't received any additional information about the boy, other than he is doing well.  I presume he is 11 years old now, but that's about all I know!  I have no idea even what state he lives in.  The NMDP did tell me I was allowed to write him a letter, anonymously, and they will forward it on for me.  I will probably do that, but I'm not sure what to say, considering I can't reveal any identifying information!  Oh well, I'll think of something.  Can't wait until June!

Be the Match.  Save a life!  www.marrow.org

Bone Marrow Donation - One Year Later

I had a message today from someone at the National Marrow Donor Program informing me that the young boy with leukemia, who I donated bone marrow to last January, is doing really well! The lady also said that since it's been a year, I'll probably be able to meet him. This is incredibly exciting! When I was asked to donate blood cells to the boy over the summer, I feared that the marrow donation hadn't gone well, and this was a last ditch effort. Either that, or he needed an extra boost to beat the cancer. Well, whatever it was, it sounds like it worked! I can't call them back because of the holiday, but you can bet I'll be getting in touch with them first thing Monday morning! Stay tuned.

Baseball, Birthday, Barbecue, and Bone Marrow

(Okay, I'm taking a little liberty with the title of this post, but I wanted it to be cohesive)!  This past weekend was jam-packed with activities, so there's a lot to cover.  On Saturday, Jer and I watched the US v. Ghana soccer match with our friends Brian, Sharon, Justin, and Stari.  I'm still a little bitter about our loss, so I won't spend a lot of time on this topic!  I will say that my favorite part of the situation was making jokes about our opposition's name by incorporating them into existing song lyrics.  "Make 'em say Uhhh....Uhhhh.  Gha-na-na-na."  Or "Never Ghana give you up.  Never Ghana let you down."  Yeah, we're corny like that.  After the soccer match, we headed out to Frisco to watch the Heroes Celebrity Baseball Event.  The Foundation that sponsored this game "is a non-profit initiative providing Dallas inner-city youth the opportunity to participate in team baseball, basketball educational and cultural curriculum, all while building self-confidence."  Some of the celebrities/famous athletes in attendance were Mike Modano, Warren Sapp, Jason Kidd, Mark Cuban, Donald Faison, Demarcus Ware, Daryl Johnston, Mike Hamlin, and Drew Pearson.  I love these types of events because they are for a good cause, and the participants have time to sign autographs and take pictures with their fans since it's not a professional game.  The heat was ridonkulous, of course, but we still managed to have a great time!  I garnered a few autographs and took a picture with Mark Cuban.

 He smelled like money

Jason Kidd

Mike Hamlin, Mark Cuban, and Jason Kidd

On Sunday, we headed over to our friends John & Jenn's new place to have a housewarming/barbecue/pool party.  It was great to soak up some sun and enjoy a couple hours with old friends.  There were six of us there who were Bishop Dunne alumni, so I guess we had a mini-reunion of sorts!  I love those guys and enjoy every opportunity I get to see them.  We also spent part of Sunday with my sister and her family since it was my brother-in-law Trey's birthday.  Trey is easy to shop for.  What was our gift to him?  A case of Sugar Free Rockstar...and he was thrilled about it.  Haha.  Of course that also meant we spent some time with my niece, Olivia.  That kid is growing up way. too. fast.  It still amazes me each time she makes a complete sentence, but I guess I should get used to it!  She's a cutie pie. 

   watermelon...yumm!

Very happy about her daddy's birthday!

We had to call it an early night on Sunday since I had to be at the hospital at 7am on Monday morning.  I underwent apheresis in order to extract white blood cells for donation to a boy with leukemia.  I previously donated bone marrow to him earlier this year, but apparently it didn't fully graft and he needed a boost to fight the remaining cancer cells.  After filling out paperwork and drawing a few more blood samples, I was finally hooked in and ready to go at 7:40.  I was having blood extracted from one arm, which was going into a machine to separate out what they needed from me, and then the remaining blood transfused back through my other arm.  My right arm was the extraction one, and I wasn't allowed to move it.  The left arm was the return one, and I was free to use it the whole time.  It was a little nerve-wracking since I'm not even comfortable donating blood like Jer does regularly, but everything went well.  The arm they were extracting from started to get pretty sore and uncomfortable, but nothing unmanageable.  Apparently the pressure in my right arm wasn't remaining strong, though, so I had to squeeze a little stress ball every few minutes to increase it.  That wasn't fun.  There was already pain in my arm, and that just amplified it with each squeeze.  Finally at 11:40, the process was over and the needles were removed.  Since I hadn't moved my right arm for four straight hours, and had endured the stress of the needle and extraction for that long, it felt like a ton of bricks were laying on it.  I didn't even want to pick it up off the bed!  It's still pretty sore now, 5+ hours later, but I think that will subside soon.  It's a very small price to pay compared to the benefits it might have for that young boy!  I encourage everyone to join the National Marrow Donor Program if you haven't already.  You could save a life!

My arch-enemy, the red stress ball

        

Bone Marrow Recipient Update

A donor technician contacted me today on behalf of the Be the Match Marrow Registry to check on my status.  I told her everything was great and any effects from donating bone marrow were long gone!  While we were talking, I asked her if there was any update available on my recipient.  She said that it normally takes anywhere from three to six months for the recipient's doctor to send an update.  Nevertheless, she checked the patient update file for me and we were both pleasantly surprised to find there was already one available!  The file stated that the patient is responding to the marrow donation, he is doing well, and has been recently discharged from the hospital.  Can you believe it?  I could not have gotten better news today.  I'm sure he has a long road ahead of him, but just hearing he is out of the hospital is encouraging.  I so desperately wish for continued positive news about him and I hope I was able to bring some joy to his family.  

The Big Day: Bone Marrow Donation

So the big day finally arrived!  At 6am on Friday I arrived at the hospital for check-in.  I met the anesthesiologist and got changed into my fashionable hospital garb.  The doctor arrived at 7:30am, and we started the procedure.  It took about an hour, and then I was moved into recovery.  I had to stay there for about an hour and a half and then I was moved into a private room.  Everything went well with the harvest, and the bone marrow donation representative was on hand to get the marrow to the courier.  Then it was on its way to the 10 year old boy! 

I was told before the procedure that I might have nausea afterwards.  I had been laying in my hospital bed for a few minutes when the nausea hit.  I asked Jer to get a trash can and I started to sit up....and then I passed out.  I came to and they determined that my blood pressure had dropped drastically.  They gave me some medicine to help with the nausea and it completely knocked me out.  I remember slurring my speech for a few minutes and then nothingness.  I think I was asleep for a couple hours.  When I came to, I needed to use the restroom.  I sat up slowly, walked in there, and sat down....and passed out again.  This time was a little more painful.  I fell straight forward and hit my head on the bottom of the IV stand.  My knee had also hit the tile floor kinda hard.  Jer rushed in there and called the nurses for help.  They carried me back to the bed and basically told me I wasn't allowed to move from there again.

I had to spend the next few hours just taking it easy and having my blood pressure monitored often.  They would compare it while I was laying down, sitting up, and standing.  The first time we tried it, I couldn't finish the test while standing.  I had to sit back down again.  The results weren't good at all, either.  Laying down = 102/58. Sitting up = 89/53. standing up = 54/40.  They told me again that I wasn't allowed to stand up because the fainting risk was imminent.  It was then that they also told me I wouldn't be allowed to leave the hospital that day.  Much to my disappointment, I had to stay overnight.  

Saturday morning I awoke feeling much better, however.  I felt more alert and hopeful.  We did the laying, sitting, standing test again with much better results.  I ate breakfast and talked to the nurse about getting discharged.  She removed the monster bandage covering my lower back and replaced it with small bandages.  The wounds looked good.  She called the doctor and got the go-ahead to release me.  It was wonderful news!  Jer drove me home around noon on Saturday and I've been taking it easy ever since.

Overall, the experience really wasn't that bad.  There was no pain felt during the procedure since I was completely knocked out.  The pain afterward related to the harvest has been mostly just soreness and stiffness.  It's hard to describe, but it feels like a lot of extra weight is on my hips whenever I stand up.  It's definitely tender at the injection site also.  If I walk slowly and sit down and stand up gently, I can completely handle the pain.  If I hadn't had the trouble with the low blood pressure, this would've been a relatively easy ordeal!  Even with the extra day in the hospital, and the bumps and bruises from my fall, I'm still VERY glad to have done this.  I can definitely manage soreness if it means it gives that 10 year old boy a chance at life.  Not to downplay the experience or make everyone think it's a walk in the park, but the trouble I went through pales in comparison to the benefit it might provide.  Please join the registry if you too would like to potentially save a life.   www.marrow.org   

Bone Marrow Donation Update 2

I spoke with the NMDP today, and they informed me that the results of my physical were good.  That means the donation is happening!  We set the date for Friday, January 15th.  I should be checking into the hospital really early that morning, and then getting released that evening.  I believe they are telling the boy and his family very soon since we just got the all clear.  Up to this point, they had no idea the doctor even found a potential match in the registry.  Hopefully their Christmas is a little more joyful knowing he's about to receive a transplant.
 
Right before my donation, the boy will receive high doses of chemotherapy and possibly radiation therapy. It will destroy the diseased cells in his body, destroy the blood-forming cells in his bone marrow to make room for new cells and destroy his immune system so it cannot attack the donated cells after the transplant. The doses of chemotherapy and radiation therapy are much higher than would be used to treat the same disease in a patient who was not getting a transplant, and they may last four to ten days.  Upon completion of the preparatory treatment, he will receive my bone marrow within one to two days.
 
Keep him in your thoughts the few days before my donation, because I'm sure it will be a stressful experience for him and his family.  I am very much looking forward to January 15th, though, and I hope everything goes as planned.

Bone Marrow Donation Update

I spoke with the National Marrow Donor Program again, and was given a little more information. They test 6 antigens and I matched all 6 with a 10 year old boy with leukemia. They call this a "perfect" match. I went in last Thursday for a one hour information session, followed by a physical. They drew more blood, did an extensive health history, urinalysis, EKG, and chest Xray. (There was no cost to me for any of this). After evaluating the results of those, and assuming I'm healthy enough for the process, they'll schedule a donation date. Tentatively we are shooting for mid-January.

There are two ways to donate - a bone marrow donation or a PBSC donation. The patient's doctor has requested a bone marrow donation, but ultimately it is my decision. I've read their materials, watched a video, and asked a lot of questions, and I think the bone marrow donation is the route I will take. I will make the final decision after the results of my physical are known. The bone marrow donation involves anesthesia and it is a surgical procedure. It typically lasts less than 2 hours, and the donor can usually go home the same day. Soreness and fatigue will usually occur, and may last weeks. The PBSC donation requires that you get injections of a drug called filgrastim for five days preceding the donation date. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. This process is similar to donating plasma. Depending on the amount they need to extract, it can take anywhere from 4 to 8 hours, and might be separated out into two days. There is no soreness, but you may experience headache or bone or muscle aches for several days before collection, a side effect of the filgrastim injections. These effects disappear shortly after collection.

With everything I know right now, I think the best and least scary/uncomfortable situation for me would actually be doing the anesthesia and getting it over with in less than 2 hours. I already fainted the first time I tried to give my blood samples, and started to feel a little queasy the second time I gave my samples, so I just think 4 - 8 hours hooked up to needles in my arms would be torture. I would hate to get hooked up and then faint and then not be able to complete the process (and possibly have it happen repeatedly). I'm a little scared about the actual donation, but I'm not wavering in my commitment to go through with it. Survival rates after getting a transplant range from 30 to 60%. Without a transplant, 0 to 15%.

More to come....

Be The Match - I Hope I Am!

A couple months back I joined the National Marrow Donor Program Registry, now called the Be The Match Registry.  It is a registry of people willing to make a bone marrow transplant to patients with leukemia or other life-threatening diseases.  After undergoing chemotherapy and/or radiation, a patient needs healthy blood-forming cells from a donor who is a close genetic match.  According to the website, seventy percent of patients needing a transplant do not have a donor in their family who is a close enough match.  This is where the Be The Match Registry steps in. 

Upon joining the registry online, you are sent a kit for collecting a swab of cheek cells.  You ship that back and your information is added to their database. Doctors query this database to try and find a match for a patient in need.  If you are identified as a potential match, you are called and asked to give a blood sample for more testing.  At this point, you are probably one of several people being tested to find the best possible match.  The chance of you being selected from here is 1 in 12.

If you do happen to be a close enough match to the patient, you are asked to attend an information session to make sure you are comfortable with the process.  A physical exam is also given to make sure you are healthy enough for a donation.  If all is well, you can donate through either a bone marrow donation, or a PBSC donation.  You can find out more about those here.  The patient's doctor chooses the method that is best for the patient.

When all is said and done, you will have participated in a life-saving transplant.  Think about that.  You saved a life.  Imagine if that person with leukemia were your parent, your sibling, or your child.  Imagine if no one in your family was able to donate, and the only option available for saving your family member was finding an unrelated donor.  Think of the impact it would make if YOU could be that person for another family.  That's what prompted me to join the registry.

As it turns out, I received a call last week that I was a potential match for a 10 year old with leukemia.  I went in to a bloodcare center and had blood withdrawn to be sent off for further testing.  Embarrassingly enough, I fainted halfway through the extraction process (I had 4 of 7 tubes filled), and couldn't complete the sample.  But that won't faze me!  I'm going back next week to finish the job and then it's a waiting game to find out if I'm a match.  It could take as little as a week or as long as 60 days to find out.  I'm keeping my fingers crossed.  Yes, the process might be daunting and painful, but that pales in comparison to the reward.

Join the Registry and save a life.