Six Month Update

I just received the 6 month update from my bone marrow recipients doctor in Paris today via Delete Blood Cancer. "The patient is recovering well, is proceeding as expected, and has no serious complications."

This is a great feeling to know they are improving and are alive today because of me!

I have still been volunteering at local events to help sign up others to be possible donors. If you have not swabbed yet, please visit the Delete Blood Cancer website and register. It's free, and you may be able to give someone a second chance at life!

DAY 100

As I have mentioned before, when a bone marrow transplant takes place, it becomes a new 'birthday' for the patient. Yesterday was day 100 for my recipient, a huge milestone for them. This is the day they have been working towards since the transplant. Robin Roberts from ABC mentions the importance of the date in this article. During the recovery process, the patient has to stay close to the hospital during those first 100 days, in case there are any problems due to a weakened immune system. Day 100 is when they get to go home, when they start to feel like eating and enjoying life again since the greatest risk of critical side effects is past. It's a long journey to this day, and often times a difficult journey filled with illness and other issues.

Once again, I start the day thinking of my recipient, hoping he is doing well, and hoping that he is now at home in a comfortable, familiar environment. Today is an important day for Americans, celebrating Independence, but I also think of my recipient, and his milestone and independence.

Houston, we have Engraftment!!!!

I finally received the long awaited call today. Delete Blood Cancer called and said they had a very brief update, which consisted of checkmarks on a form. The good news: Engraftment has occurred. This means that my blood stem cells have found their way to the spaces in the large bones and have started producing new blood cells for my recipient. What's really crazy is that experts are not completely certain how this amazing process works, but the cells just know where to go I guess. So my blood, is in him. Very strange feeling. I'm so happy to hear this news finally.

There was also some not so good news in the update, they mentioned that the patient is having some kind of complications. Nothing specific, so I don't know what it is. Since their immune system was non-existent and at best very weak now, it could be something like pneumonia, or just about anything I guess. I continue to pray that he gets better and better.

It's all starting to hit me now.... It was kind of surreal and strange, I just sat on a machine at Georgetown University Hospital on March 24th for a few hours and then my stem cells went off in a plane to Paris, France and went into someone else on the 25th. It didn't really feel like anything spectacular had happened at the time. I knew someone needed a bone marrow transplant due to Acute Myeloid Leukemia, but the separation and anonymity of everything kind of desensitized it all. But now that I have had an update from the patients doctor, I cried a little. Someone is really alive today and it's because my cells are making blood in them right now. I'm so happy today to hear this. It may be some time before I get another update, but hopefully I'll continue to get good news.

76 Days post donation

It has been 76 days since the transplant and still no word from the patients doctor. Delete Blood Cancer has asked again for an update, hopefully we will hear something soon. I am hoping that they are progressing well as the important 100 day milestone approaches.

I did get some good news, the Bone Marrow Drive at Microsoft in Las Colinas, Texas, will happen on June 24th. Delete Blood Cancer will be there to help me register potential matches at work. Microsoft has even offered to pay for the processing costs of anyone that registers at this event! Delete Blood Cancer normally pays for the processing of the cheek swabs from donations, but Microsoft will donate the funds necessary for this! Many people never know the good things that Microsoft does behind the scenes, helping out at so many levels with charities.

This past weekend, I was wearing my 'Bone Marrow Donor' shirt provided by Delete Blood Cancer, and a man introduced himself to me while eating lunch at a restaurant in the hospital district in Fort Worth. His 13 year old son was diagnosed with AML three week ago and they were there to start chemo therapy. I shook his hand and wished them luck. He seemed in very good spirits. I felt really bad inside knowing the hard journey ahead of them, but deep down I know things are going to work out for them.

Almost two months post donation

So much has happened in two months, yet every day I still think of my recipient. I have asked DKMS for updates and we still have not heard from the patients doctor. I'm really getting anxious to hear how they are doing.

My wife and I volunteered at the Byron Nelson golf tournament to help register donors for DKMS. It was late in the day on the last day of the tournament, so it was challenging to get folks to stop as they are herding to their cars, but we were able to get some great people to register! We are trying to work in another opportunity to register at the Colonial Golf tournament this week if we can fit it in. The registration drive to be held at Microsoft is still in the works too. Hopefully, I can continue to have an impact with helping to save additional lives. I would love to be able to donate again and again, but I doubt I will match anyone else in the future, so helping out in other ways is all I can do.

Day +31

When a bone marrow transplant patient receives their transplant, they get a new birthday. The transplant day is known as "Day Zero" for them, when they get a new gift of life from the donor. Each day after that is a new milestone of life. Each little step is celebrated and indescribable. The initial goal is to get to Day +100, which is a huge milestone on the road of recovery. This is when they typically get to go back home and start to enjoy a normal life and the highest risk of infections are behind them.

Today my recipient is on Day +31.

I still think of him every day. Hoping that they are feeling better. Hoping that the worst is over and they can begin the journey of enjoying a new life.

I contacted DKMS today and they said they have requested an update from the doctor and it will most likely be early May before we get feedback. The waiting is hard for me. I don't know that I will ever stop thinking of this whole experience. I am convinced that even though we have to remain anonymous, somehow, someday, we will meet.

So what's next?

A funny thing happened after I returned home from this whole experience. My donation was done, and there seemed to be nothing left to do but wait for word on the outcome of the transplant. Everything went so smooth, and it was over before I knew it. I thought to myself, "What else can I do besides wait?"

I have decided to coordinate a bone marrow drive at work. I contacted DKMS and my HR department to get started on this process. I am even thinking of trying to reach out to the community to have others come by during the drive as well.

I'll update here when I know more...

A week and a day

So today has been one week and one day since my donation. I went back to work last week, well, Thursday didn't go well as I had mentioned in my last post. Friday I felt much better, and worked from home. Saturday I think I was probably close to 90% normal. I do sports photography on the side, and went to shoot a Major League Soccer game that night. By the end of the night, I was getting a little worn out, but it was late so I kind of expected it. Sunday I attended church and then didn't do much else the rest of the day.

Every day I still wake up and immediately think about my recipient. Any day now I'm hoping they get the uncomfortable aches of my cells taking over, which would be great news for them as this would indicate engraftment.

DKMS called me again today to check on me. I was happy to report that I'm feeling tip top! I still have a slight rash around the needle mark for the return line, mainly from where the tape was. No aches or pains any more though. They mentioned that they do not get any kind of automatic updates from the recipients doctor, and reminded me that they will contact them at the one month mark for a status. I will be so anxious to hear how things are going. I think I'll set a reminder on my phone for April 24th!

I still feel kind of strange now that everything is over. I guess it hasn't fully hit me what I've done, since I can't put a face to who I helped. I know it was a huge impact for them, as I was the only one that could help, but it just feels strange right now. I guess that may be why I was really hoping to be able to meet them some day, so I could see who I helped. Perhaps they will send me an anonymous letter or card, and that will help. I have been trying to think of what to send them.... I absolutely want them to know how excited I was to be able to help them, and how much I hope they are doing better. I also want them to know that I hope their family is happy and enjoying time together, which is kind of stupid, as I'm sure they are ecstatic!

I think I'll start working on a letter to send them.

Recovery Day 3

So this morning I woke up feeling pretty good. I planned on heading back to work today, which should be no big deal as I sit at a computer most of the day. I got a call from DKMS asking how I was feeling and thanking me again for what I've done. I did find out that my donation went to France and that the transplant went well. That also brought some bad news. France does not ever allow donors and patients to know who each other are. I will never find out who they are, and they will never know who I am. I can communicate anonymously and that's it. While this did make me very sad, it would not change what I've done, I would do this again and again no matter what. They said that it would be about a month before I can get my first update on how my recipient is doing, so that will be a very long wait for me.

I went in to work and thought I would be fine, but a few hours in I started feeling dizzy, nauseous and light headed. It was strange, because I have not felt like this at all through this whole process. I laid down for a while then drove home and slept. I still have a slight headache and feel exhausted again. So much for feeling 100% today! Maybe tomorrow or Saturday.

Recovery day 2

My first full day home. I didn't sleep in like I thought I would, woke up around 7:30, but that would have been 8:30 D.C. time, so I can understand. I have been thinking of my recipient a lot today. Going through my mind about the transplant, and how they might be feeling. I will be very anxious to get updates from DKMS on the progress.

I felt really good early today, hardly any fatigue and very little aches. Went out for lunch with my wife, and then in the evening I went to the store to grocery shop. About halfway through that, I started feeling a lot of pain in my lower back again and feeling very tired. Maybe because I was up a lot or I tried to do too much, but it wiped me out by 8:00. I'm sure I'll continue to feel better each day, I thought I was close to 100% today but now realize I was not.

Quick update

At the airport waiting to leave, but I stopped by the hospital before we left the hotel and spoke to my nurse. She informed me that my donation arrived safely! I was so happy to hear that, it just made my day. She was so nice, she even mentioned that she thought about me this morning when she woke up. She knew we were meeting Senator Cruz and since it started snowing this morning she was worried we would not be able to see him. 

Last day in Washington D.C.

I woke up this morning at about 6:45am, and immediately thought of my recipient. I imagined my stem cells arriving and the process starting for them. I am praying for success in the next couple of weeks for engraftment to take place and things to really start moving for them. Engraftment is when the new blood-forming cells start to grow and make healthy blood stem cells that show up in their blood. They are most vulnerable to infection during this time. For patients who receive marrow or peripheral blood stem cells (PBSC), engraftment can occur as early as 10 days after transplant but is more common around 14-20 days.

I also thought about how tough it's going to be for the first year until I can request to find out who they are, if they want to know who I am. With them being an international patient, I need to find out if the same rules apply where they are, as I've heard some countries have different waiting periods before allowing anonymity to be broken. They are going to weigh heavy on my mind for a while, hoping that they will recover completely. I will be able to get updates through DKMS on milestones, like engraftment and progress, but it will be very minimal information.

Our last day in Washington D.C. and it's snowing! It's not sticking anywhere, so I'm not worried about getting out of here tonight, but it sure makes an interesting view compared to the weekend. Here is the South end of the Capitol Building with snow, and you can see the flag on top, which means the House is in session.

We got to briefly meet Senator Cruz this morning and he thanked me for my donation, and I thanked him for his service. We had lunch at the Capitol visitors center, then headed back to the hotel to wait for the car to the airport. 

My symptoms today are still present, but I am feeling much better. I still have lower back pain, and headache, but it's definitely getting better as the day goes on. I can't wait to get home and give my kids a big hug.

All Done!

When they did the blood draw this morning part of that was to test how many stem cells were in my blood after the days of injections. They were super happy with the amount that my body produced, about 8 times more than needed! This was good news in many ways, it allowed them to collect extra in case it's needed for the patient, but it also meant I spent less time on the apherisis machine. Instead of 4 to 6 hours, I was on there just under three hours! Everything went smoothly. I did get a little tingling in my fingers and toes, but they gave me some calcium and it went away pretty quick. 

This is me hooked up to the apherisis machine. The blood goes in from my left arm, and a centrifuge separates the stem cells and plasma and the remaining blood returns in my right arm. They will actually mix the plasma and stem cells for transportation, as the plasma is necessary to keep the stem cells healthy and not clot up.

And here I am after everything is done. The plasma is the yellow on the left, and the stem cells in the red. Right after taking this picture, a courier took them both in a little red igloo cooler to be flown to the patient.

My wife on the far right, and the wonderful staff at Georgetown University Hospital. They took wonderful care of me through the whole process.

Since I finished early, I stopped to support a fellow donor next to me.

Time for some rest now, then will go out for dinner later. I'll write up more on the process and my thoughts later.

D-Day!!!! (Donation Day)

Woke up this morning early and met the hospital staff in the lobby, got my last round of shots and my return line put in. They took another nine tubes of blood to check my platelets, stem cells and white blood cell count. 

They explained the whole process to me then hooked me up to the apherisis machine. I'll be here for a while so I'll update again later.

Day four, part two

Well, the nurse this morning said that the shots today would get to me, and she was right. For most of the day, I didn't really know if I felt any more pain anywhere, but overall I just felt wiped out. My wife and I kind of knew that today was probably going to be a slow day so we didn't plan on anything in particular. After the injections, we walked to The Old Stone House, which is the only pre-Revolutionary War building in the area.

After this we walked down to the Potomac river and had brunch at Chadwicks, and then saw Divergent at the AMC. Even though we didn't walk nearly as much as yesterday, and sat in the theater, I still felt pretty worn out. We had an early dinner, came back to the hotel and just watched Netflix for a while and going to sleep early tonight, around 10:00. 

I have been taking Calcium supplements for almost a week now, and will be bringing the bottle with me tomorrow. I'll get up around 5:45 in the morning to get all my things together, and meet the staff in the lobby at 7:00. I'm getting just a little nervous, not about doing the donation, but just having the needles in my arms for hours. I think once it gets started, I'll be fine. 

Thinking again of the recipient and what might be going on while I'm hooked up to the machine. I will be so happy when I see my stem cells in the bag, going away with the courier and on the way to help them. 

Day four, part one...

Just received the fourth round of Filgrastim injections. The nurse asked the usual questions for any symptoms, and when I mentioned how much walking we did yesterday she was very surprised that I was out and about that much on day three. I did mention that I did have to slow down at times, and that I was uncomfortable here and there, but it was all worth it. She did say that by the end of the day today I may be feeling a little worse. I still feel discomfort today in my lower back, but the area that has been the worst for me is just behind my ears, where the bone is at the base of my skull. This area has been throbbing the most. The area that they have been giving the injections was a little sensitive by the end of the day yesterday, and is still sore today.

My recipient has been on my mind yesterday and today. I can't imagine what they are going through, and hope that my donation brings them healing and comfort.

I will update again later today. Here are a couple of pictures I took yesterday. One is the ceiling in the Library of Congress, and the other is just a scene I captured at the Vietnam Memorial Wall.

Day three, part two...

So it's 8pm on day three of the injections. As I mentioned earlier, I did feel some pain in my lower back and a little in my head, but that was about it. Well, we walked for miles today to visit the Lincoln memorial, Vietnam memorial, Capitol Building tour, Library of Congress, Smithsonian American History museum and the Smithsonian Museum of Natural History. For the most part, while I was walking, my lower back felt fine, only occasionally reminding me of why I'm here! There were a few times today that I had to slow down and sit down for a bit. When I sat down, I would really feel the throbbing pain through my back and the lower back part of my head. It really caught up to me by around 4 or 5, slowing me down considerably. It wasn't bad enough to make me want to crawl in bed, but it was very uncomfortable at times. I can remember when I sat down at the Vietnam Memorial wall to get a pencil rubbing of some names, and my head started throbbing really bad. 

We had dinner near the hotel and are now laying in bed and feeling very tired. What is difficult is to try to distinguish what is sore from the Filgrastim injections and what is sore from the miles and miles of walking. We did take the train and bus back to the hotel at the end of the day, as we knew we would not be in the mood to walk the three mile hike back.

Tomorrow the weather is going to be quite a bit colder than today, and I'll have to see how I'm feeling to determine if we will go out and do much. I have a feeling we will not do a whole lot, and just get a bunch of rest. We may go see Divergent at the theaters, that would not be too hard on me.

It was very cool seeing so many historical things today. Also standing in the places where so much history for our country was made was just awesome. Time for some rest, one more day then it's time for the donation!

Day three, part one.

Woke up this morning with a dull throbbing pain in my lower back, so that means the Filgrastim is working! Every now and then it bothers me, but then it goes away so it's really not too bad. I get a little throbbing in my head too, that coincides with the back pain. I took two extra strength Tylenol, and will take those every 5 or 6 hours. They have said to not take too many Tylenol if the pain is not going away, they would prefer I take something with codeine instead. I opted to just see how I do today with only Tylenol. The nurse did say that being out and about will help with the pain, so we are walking back to the Capitol Building and Smithsonian museums today, but will take the train and bus back to Georgetown at the end of the day.

They just gave me day three shots, and I will update again at the end of the day to see how I'm feeling. 

Filgrastim, round two

After arriving at Dulles airport, I went straight to Georgetown University Hospital for the second round of Filgrastim injections. After the brief pain yesterday, I was not looking forward to the shots. I was so relieved when the first shot was overwith and realized that they really know what they are doing here, because I didn't feel a moment of pain! They went much slower with the injection, which was the key to it being pain free. The second shot went in my other arm and it was as easy as the first. I asked if spending two and a half days walking around the city was going to cause the Filgrastim side effects to be any worse, and they said that actually it would help some. My wife and I left the hospital and walked many miles. I was so happy to be able to see the Constitution, the Declaration of Independence, and the Bill of Rights at the National Archives. We went by the White House, the Treasury and many other historical buildings. After dinner off Wisconsin Avenue in Georgetown, I am now in the hotel resting. I am a little sore, but I think it's more from all the walking than the Filgrastim. So far I can't really discern if any of the aches I have can be attributed to the injections. I'm sure it will change for day 3 and 4, but I'm feeling pretty good about things right now.

Tomorrow will be a big day, a lot of walking again, Capitol Building tour, Smithsonian Air and Space Museum, Lincoln Memorial and whatever else we can fit in. But before all of that, I'll get day three injections at 9:00am. We'll see how I feel tomorrow night!

For Real This Time....

Here I am at the airport, ready to go to Georgetown University Hospital. Those of you that are Quentin Tarantino fans may have caught my movie reference.... Dry Run last week, then For Real This Time.... Jackie Brown. Anyway, it is for real now. I didn't really feel any side effects from the Filgrastim shots yesterday. I did have a slight headache, but not really different from any other day. I don't think it was from the shots, just usual end of day-ready for bed tired.

Executive Car Service picked us up in a limo at our house this morning, so nice to not have to worry about parking or getting a ride or anything. Once I arrive at the hotel I have to drop in downstairs at the hospital and get my second round of shots. When that's done we'll wander off to find some lunch in the area, then probably head over to the White House, Lincoln Memorial and other sight seeing.

I hope my recipient is doing well. I thought about them quite a bit yesterday and this morning. I hope they have some comfort in knowing that help is on the way. I'm sure they are nervous and their family is worried about the whole process, and once my donation is complete and they receive it, maybe they will begin to cheer up. More later....

First shot of Filgrastim (Neupogen)

Well I just had the first Filgrastim injection today. It was actually two shots, one in each arm. I was a little surprised, it did burn quite a bit as it went in! It felt like a little torch blowing a flame on my arm. But the pain went away immediately after the shot was done.

Before the injection...

Prior to the injections, they did my vital signs and surprisingly my blood pressure was a little higher than normal, maybe I was a little nervous? They took some blood, just one tube this time. This will get sent off to a lab to get a report of my white blood cell and platelet levels prior to the injections. They will repeat this after the last injection on Monday to see how much has changed.


Second shot goes in... my wife said I had my 'fake smile' on. I was wincing a little!

The shots didn't take as long as I thought, even though she did go slowly with the injection. So it was all over pretty quick. There were little bumps where the Filgrastim went in, but after about an hour it was normal again.

after the shots, waiting for any reactions

After both shots were complete, it was time to just sit and wait. They checked for any redness around the injection site, one arm was a little red while the other was fine. They asked if I felt hot or dizzy or nauseous, but I felt fine. After about 30 minutes or so, they sent me on my way.

Overall not too bad. Tomorrow morning we fly to Washington, D.C. and check in at Georgetown University Hotel, then I'll get the second round of shots as soon as I arrive. Then we'll head out for lunch and explore the town! So excited that the time is finally here and that I'll be donating!

Filgrastim has arrived

The first dose of Filgrastim has arrived today. They sent it overnight, and has everything needed to give the first injection. Actually, I think I mentioned, it will be two injections. So two needles and two bottles arrived today.

The filgrastim (Neupogen) has arrived!

I have to keep the filgrastim in the fridge until my first shot Thursday. For some reason, my primary care physician has decided not to administer the first injection, but no worries, there is a medical place about a mile from my house (much closer than my PCP) that will be doing it instead. Prior to the injection, they will draw blood (again!) to get a baseline of my white cell count, platelets, and then check vital signs. For days 2, 3 and 4 of the injections, they will only do vital signs each day but then on day 5, the day of the donation, they will do another blood sample to see how effective the filgrastim has been. It's really starting to sink in now, that I'm getting ready to save a life. 

I've been taking calcium supplements for the last couple of days and will continue to take them through the donation. The reason for this is that during the donation, there will be an anticoagulant mixed in my blood, which can cause dizziness or tingling in the fingertips and mouth area. If not treated, the tingling will eventually turn into cramps. Calcium is given to offset the reactions of the anticoagulant. The nurse at the hospital during my physical said it's a good idea to start taking the calcium supplements about the same time you start the filgrastim injections, but I figured I might as well get a good head start!

Once the injections begin on Thursday, I'll be running daily updates on the blog through the donation and for a few days after. I want to do this to document how I feel each day, so that anyone that is contemplating doing this will know exactly what the experience may be like. This really helped ease my mind when I was first notified that I was a match, to know what to expect, and how different people felt when taking the filgrastim shots. Most people say they do get aches and pains, and headaches, but I'm hoping that it will be minimal for me, and that I will still be able to visit areas in Washington D.C. with my wife for a couple days prior to the donation. From what I have seen, the 3rd and 4th days are the roughest, with the 4th day seeming to be the worst. The 5th day I will get a shot early but then immediately be hooked up to the apheresis machine for the donation, and lay all day so I don't anticipate feeling any worse that day. 

One last day of getting everything in order tomorrow. Still have to finalize transportation to the airport Friday morning, as well as schedule the exact time of the injection on Thursday. The coordinator at DKMS still has to send me information on who to see about getting my daily shots once I arrive at Georgetown University Hospital on Friday. I believe it's all been arranged, but they just need to send me the itinerary. The people at DKMS have been wonderful through this whole thing. Which brings me to something else I should mention..... my job. Most of my friends and family that read this know I work for Microsoft. When I mentioned to my manager that I was a match for someone, I have received nothing but support the whole way. I never had to worry about taking the time off to do this, and I have several colleagues at work that have moved schedules around to cover my shift and workload while I will be out. They have all been wonderful, have and will be covering for me without any complaints. They know the importance of what I'm doing and I can't say enough of how great it is to work for a company and with colleagues that support you 100% for something like this.

Proud Dad

While I was discussing the donation with my wife last night, my 12 year old daughter chimed in while working on her homework.... "I hope I get to do that some day!"

I hope so too, sweetie! I have a feeling she'll be registering when she is 18.

What are the odds?

According to Bone Marrow Donors Worldwide (BMDW is the continuing effort to collect the HLA phenotypes and other relevant data of volunteer stem cell donors, and is responsible for the coordination of their worldwide distribution) the current number of donors and cord blood units in the BMDW database is: 23,577,584

Participants in this database consist of 73 stem cell donor registries from 52 countries. During the early discussions with DKMS I discovered that I was the only person that matched out of all of the registered donors.

I was telling someone at church yesterday that I feel kind of strange when people say how wonderful it is what I'm doing, when I didn't really do anything special. I am not like doctors that went through years of education and training, or an athlete that spends hours a day training.... I didn't do anything in particular to make my body match this person, I just basically happened to be a lucky match! All I did was exist! 

Plane tickets and hotel reservations were taken care of today. I'm getting more excited as the donation draws closer. There was a beautiful sunset today, and it made me think of the patient, wherever they are, looking up at the same sky. They probably started the process of chemo today. I'm praying that the hope of my donation will keep them strong through the pain. I wish I could send a message to them to hang in there, that I'm doing what I can.

Good News!

The final blood tests are back, and everything is good! They are working on the clearance documents and once all of that is wrapped up everything will be scheduled. One week from today I begin the filgrastim injections. While at the hospital on Tuesday, they did tell me that since they are subcutaneous injections which are administered just under the skin, that it will sting a little. They also said that due to the amount of the injection and the fact that they are kept refrigerated, this will cause it to sting too. There will be two shots, because the amount they give me is too much to fit in one needle. They suggested asking my doctor to let it sit at room temperature for about 5 minutes before administering, and to push it in very slowly to help reduce the amount of pain. I must admit, I'm a little nervous about getting these shots, but I'm sure it won't be as bad as I'm imagining it will be. Plus, I keep telling myself it's nothing compared to what the patient is going through.

I studied really hard for the physical exam and it paid off!

I arrived in Washington D.C. yesterday and was greeted by a nice gentleman from Pakistan that drove me to the hotel in a very comfortable Lincoln. This was really nice not having to worry about a taxi to and from the hotel.

The hotel was kind enough to check me in even though I was about 4 hours early. I immediately walked about a mile to get lunch, enjoying looking at the area of Georgetown as I walked. I really liked the buildings and the detail in the architecture.

After lunch, I was only another mile and a half from the White House, so I figured why not, and walked there enjoying more of the scenery along the way. At the White House, there was some protest going on, which was interesting. People chanting and yelling with a megaphone at Obama. 

I walked back to the hotel and was pretty much done for the day.

Exam Day: Woke up early and had breakfast down in the Starbucks on campus. At 9:00 I met someone from the hospital and they took me over for my physical exam. Sucking more blood out of me like Dracula, they took 11 tubes this time (this makes 21 tubes total so far) and checked glucose, platelets, potassium, and three pages of acronyms that I don't remember what they mean now.... they said all were normal to excellent. One final check again for diseases and the donation will officially be scheduled. It will take about 2 or 3 days to get those last results. All previous blood work was fine, so unless I picked up something in the last couple weeks (don't think so!) then I expect this last check to be fine as well. They also did UA to check ketones and other stuff, and said that everything looked good.

Then they did an EKG and I asked what they were looking for here. They said that they need to be sure that the heart muscles are functioning well and that the valves are closing properly. All of this is to know that your body will perform well when hooked up to the machine for the donation. He went into detail about other things they were needing to see, but I already forgot what the names of things were.

They said my heart was working great! As I mentioned before, a great thing about going through this process is finding out exactly what condition your body is in.

I was able to find out that the patient that I'm helping is international. This makes me want to know even more about who they are and where they are from. They also told me that my match was 9 out of 10 markers. Human leukocyte antigen (HLA) typing is used to match donors with patients. This is not the same as ABO blood typing. HLA is a protein – or marker – found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not. I asked what is acceptable, and they said typically doctors would prefer at least 8 out of 10 markers to match, so I said 9 is ok then and they replied, 9 is more than just ok, it's great.

They discussed with more detail about the procedure and the filgrastim injections leading up to the donation. Most people will feel aches in the pelvic area and sometimes clavical as these areas have higher concentrations of stem cells. They informed me to keep an eye on any pains in the left rib cage area where my spleen is. I had read quite a bit already about this whole process and was familiar with limited cases of enlarged spleen due to the filgrastim injections. They said 3 patients out of over 20,000 donations had this issue, and all were admitted and returned to normal health. I don't think I'm worried about it, but it's good to know anything that I should be looking out for.

So then I returned home that evening and will begin the injections in just 9 more days, as long as the last lab results look good. Still very much looking forward to doing this. Everyone at the hospital were very nice and understand that it's a special thing to be matched, and that it's also a good thing for someone to go through with the donation. I just don't see why someone would not donate if they were found to match someone. Stay tuned, more updates soon!

Dry Run

So today is what feels like a dry run.... Quick overnight trip to Washington D.C. for my physical exam, EKG and chest X-Ray, then immediately back home. I'll be taking the same flight in just 11 more days for the donation. I travel alone today, but the next trip Stephanie will be joining me. It's really starting to get exciting now, thinking of the whole process coming up. I'm hoping that the patient that I'm helping is doing well and prepared for what is to come in the next few days. They will begin the process of intensive chemotherapy and radiation to completely kill all bone marrow leaving them with no immune system at all. For some strange reason, at this stage of the donation, the quote from Star Wars keeps going through my head, "Help me Obi Wan Kenobi, you're my only hope". I am literally the last person on Earth that can save them, and I'm so happy to be the one that can do it. I feel no pressure or obligation to do this, just the inner peace of knowing that I'm doing the right thing.

I've booked an early flight today so that I can spend the day sight-seeing, then the exam will be tomorrow morning.

Visit with my doctor

On my way to work today I stopped and had a visit with my primary care physician to discuss some things and asked about the filgrastim injections. He was a little familiar with the process and did not have any concerns at all. He will actually be the one to administer the first injection and keep me under observation to make sure I don't have any allergic reaction or other issues.

I contacted my coordinator from Delete Blood Cancer and they have made the flight and hotel arrangements for my upcoming physical next week. I'm getting excited to get the next steps done in this process. During the physical they will do another blood test to ensure I am still disease-free, as well as some testing to ensure I am healthy and will not have any issues during the donation process. 

I did get some sad news today, I had hoped to visit the White House during my short time in Washington, D.C., but you have to submit a request from a Senator well in advance for a tour. Since all of this happened so quickly I was not able to get on the list as March is already fully booked up. Senator Cornyn did get me signed up for a tour of the Capitol building though, so that will be cool. I will also get to have coffee with Senator Cruz the day after my donation before heading back to Texas. 

 

Me killing time waiting to see the doctor today!

He asked my opinion about the Surface and said there were features that he really liked.

Just a matter of weeks now

So the dates appear to be set. I think it's safe to say that I'll be going to Georgetown University Hospital in Washington D.C. for my physical and then again for the donation. Since Georgetown University Hospital does more bone marrow harvests than any other facility in the country, this process will still be somewhat anonymous.

I will be flying out in about a week and a half for my physical. I will stay overnight then come back home. I will be alone for this part of the process, so I'm not sure what all I will do in Washington D.C. for just a day. I'll probably walk around and photograph as much as I can while I am still at 100% health, because when I go back for my donation, I will have been taking the filgrastim injections and those can make you tired and achy so I may not be up for a lot of walking then. I may stop by Capitol Hill and see if Bill is still hanging out on the steps.

I have been thinking a lot about the recipient. What he is going through right now to prepare for this. I've been reading as much as I can about the whole process, and when patients go through chemo/radiation treatment designed to cause remission, they say that the initial treatments are tough as they are a high dose. When it gets to the point that the patient needs a bone marrow transplant, they must completely kill all of the existing cells with chemo/radiation, and the doses required for this are even higher than they have ever had at any time in their treatment. This must be incredibly difficult to go through, but I can only imagine knowing that there is a donor waiting to help them keeps them going through it. I asked today if the patient was in the United States or not, and they said they can't reveal that info yet, but will be able to tell me when I donate. I'm also curious what the background is of the patient, since we are a genetic match.

I also think a lot about their family and what they have endured through this. You have to wait one year before you can request to find out who the patient is, and the patient will have to agree to identify themselves. I will be able to find out basic things after certain periods of time, like how the procedure went, if they are getting better, etc, but I will be counting down the days hoping that we can meet some day. Perhaps they would enjoy reading my blog and see how excited I am to help.

During all my reading about the filgrastim injections, it looks like they are going to sting a little when I get them. I hope that I do not have any reactions to the shots. I can stand a little discomfort and take Tylenol to help with any small aches. These are the shots that I will get for 5 days leading up to and including the donation day that increase and move more blood-forming cells from your bone marrow to your bloodstream. Whatever happens, sting or not, it's only a handful of shots and some aches and pains, it's the least I can do!

I read that according to the National Marrow Donor Program website, www.marrow.org, the odds of a non-family-member getting to this stage are about 1 in 20,000, and for those matches, 1 in 12 are chosen to donate. So I was thinking, between this, and getting struck by lightning in my Corvette back in 2001, I can't figure out why I have not won the lottery yet. Maybe I should still buy a ticket once in a while. Who knows what could happen...

I love it when a plan comes together....

So I just spent almost an hour on the phone with the coordinator from Delete Blood Cancer (DKMS). We went over the entire procedure and what to expect. I will go to the hospital pretty soon to complete a physical to ensure I am healthy enough to go through the donation procedure, and to also make sure my veins are big enough for the needles! I'm always told that I have good veins and they never have to poke around to draw blood, so I'm guessing I'll be fine in this area. I did find out that the patient that I'm helping is a gentleman that is older than I am that has Acute Myeloid Leukemia. That's about all I can say.

Once they complete the physical and everything checks out there, the patient will undergo Chemotherapy and it is vital that I go through with this or they will certainly die. The form of leukemia he has is acute, which means it can progress quickly, and if not treated would be fatal in a few months. I feel like it's a no-brainer decision here. I either help him or he dies. I have an appointment with my family doctor in a few days to discuss the procedure and get his thoughts on the process. The injections that I will receive for 5 days prior to the donation are a stimulant to produce additional stem cells in the blood prior to the collection. From what I've read, there can be considerable discomfort while taking these injections. I don't mind being uncomfortable for a week to help save a life, but I would just like to hear my doctors opinion on the whole thing. Overall I'm very much looking forward to this, it is mind blowing to think that his life completely depends on me right now, but I'm only more than happy to help.

So the dates are almost set, everything will happen in the next few weeks. The coordinator is getting flight info and hotel reservations ready for me, as I will be going East to a hospital to get my physical and then again for the donation.

in the beginning....

I am starting this blog to write out my thoughts and events that occur as I begin the process of donating peripheral blood stem cells. Peripheral blood stem cell, or PBSC, donation is one of two methods of collecting blood-forming cells for bone marrow transplants. The same blood-forming cells that are found in bone marrow are also found in the circulating (peripheral) blood. For PBSC donation, your blood is removed through a needle in one arm and passed through a machine that will collect only the blood-forming cells. The remaining blood is returned to you through a needle in the other arm. This process is similar to what is used when donating blood platelets.

My story begins around October 2008, when my wife and I attended an FC Dallas soccer game and there was a booth set up to collect cheek swabs in an effort to find a bone marrow match for a players wife. Real Salt Lake forward Andy Williams' wife Marcia was diagnosed earlier that year with Leukemia, and in trying to find a match for her, they had a drive at the game to find potential donors. We filled out the forms and rubbed the cotton swab in our cheek and didn't think much of it after that. She eventually went on to have a cord blood transplant in 2009, as they could not find a suitable bone marrow donor, and has done well with her recovery.

More than 5 years after getting swabbed at that soccer game, on December 20th, 2013, I received email on two email accounts that I use, and a phone call on our home phone informing me that I was a potential match for someone! I did not see the emails right away and was not home to get the call, so I was a little anxious to see what was going on.

The next day, I called Delete Blood Cancer (DKMS) and asked how I could help. They said that my swab had indicated I was a potential match for someone and asked if I could go in for blood tests. Due to the Christmas holiday, I was not able to get my blood drawn until the 26th. They took seven vials of blood and had them shipped off immediately for testing. They look for signs of any infectious diseases that would prevent you from donating such as HIV or hepatitis, or any other conditions that would not allow you to donate, like cancer or diabetes.

It was a long period of waiting after this, to know for sure if I was going to be the one asked to donate. Sometimes, there are several candidates and the doctors will determine who is the closest match. They said at the time they contacted me that I was the only possible match in the database, so it was pretty likely that I would be the only one that could help save this persons life.

I finally received the call on February 25th that the blood tests looked good, I am healthy and the doctor would like me to donate. I responded with the answer, "yes, I would be happy to donate" without any hesitation.

The next step from here is a long conversation to go over the entire process, and sign some forms. That will happen later today. Due to the private nature of the entire donation process, I have to be vague about when and where the donation will occur, and not reveal anything I learn about the patient.

I'm very much looking forward to this process, even though I know there will be several days where I'm not going to feel too good. I know that somebody is going through much worse and is depending on me to help them survive.

Stay tuned, as many of you know, I love to photograph, and I will try to include as many pictures of the process as I can. Things are about to start moving quickly, and then a long wait to know if my donation helped.