August 7, 2008 - it came back...

Sitting here in the hospital, not able to go asleep because they wake you up every 4 hours, I think it's a good time to just lay out my whole situation thus far.

As the title suggests, it was the 7th, and I just doing my bi-weekly blood work/check up at the KU Outpatient Cancer Center in Westwood. I felt fine that day, and was preparing to go to a Woodturning Workshop I got a scholarship to go to at the Anderson Ranch Arts Center outside of Aspen,CO. School was about to start and I was enrolled in 16 hours; I was getting really charged up to make some sweet things and learn. I also had moved into a 2-bedroom duplex right on campus for $490 - a steal if you ask me, because that 2nd bedroom was going to be my studio. Let's just say, I was ready to kick another semester's ass.

The Complete Blood Count test (CBC) showed some abnormalities unfortunately, and prompted my doctors to do a Bone Marrow Biopsy stat. Five months earlier, I had one done because Dr. McGuirk found a new study that said if you had certain microscopic markers in your DNA, you would relaspse. He sent it to the Mayo Clinic, where the research is being done, and my results came back positive. McGuirk's assessment was that since it's a new study and that there hasn't been enough evidence, I shouldn't worry about it for now. The study might be inconclusive.

Well with this study in the back of his mind and the abnormalities in my CBC, the word 'relapse' was on my doctors' tongues. The cancer came back, when I only had 2 more months of maintenance chemotherapy left (low dosage stuff I've been taking the past 2 years).

Why did it come back? The cancerous leukemic blasts got used to the medications I was taking. I got admitted at KU Med that night, while my team of BMT (Bone Marrow Transplant) doctors feverishly decided on what protocol they should use to bring me back into remission. The only option for continued life for me after that is some sort of stem cell transplant (bone, cord, stem).

Dr. Abhyankar decided that I should be put on a protocal called COG. It's a pediatric chemo regimen that's intense, but since I'm in that borderline kid-adult age, they though I could handle it. Well, some of my adult qualities won over and they had to monitor my fribrinogen levels so that I didn't bleed or clot. Fibrinogen is a protein that helps synthesize platelets, fyi.

My parents came out immediately and we had a conversation with our doctors about what options I have.

The transplant option all doctors seek out first is from a siblings' marrow. Unfortunately, my full-blooded brother Kris was not a match. After that doctors want an unrelated bone marrow donor, that is someone in the world wide registy that sufficiently matches your DNA (ideally as close to 100% as possible). They looked, but my results coming in where abysmal. If you are of a homogenious background then you have a better chance, but since I'm mixed raced, Black and Asian (specifically Filipino), it's astronomically impossible to find someone out there that is registered, or who even exists. Minorities in general dont have good representation in the world wide bone marrow registry.

The second option, which sounds the most promising was a cord blood transplant. The stem cell donation occurs here at childbirth. These umbilical cords are rich with stem cells. The only problem for me is that one cord isn't big enough. I'm 6'2.75" all man... all loving. The other problem is it takes roughly 90 days for your body to accept the new marrow, and during that time you have absolutely no immune system. The littlest thing will kill you. The good news is that they do double-cord transplants, which roughly cuts that engraftment time in half. That morning however, the transplant coordinators were drawing up blanks for finding suitable cords. That was a jab to the kidney.

The third, highly experimental, highly developemental option is a mismatched donor, where they take bone marrow from both my parents and splice them somehow. They only try these in 3 places in the world; Seattle, Johns Hopkins in Baltimore, and in Paris. If it came to this, I'd basically be a guinea pig.
To say the least, it was tough.

Later that afternoon though, we got a call that they found 2 suitable cords, and within the next day they had gotten several more from the world wide registry. hallelujah!!

Pros and Cons of Bone Marrow Transplants to Cord Blood Transplants
The reason why Donors are prefered first is that the engraftment period is shorter and they have been done longer. With cords, it takes longer, but there is less of a chance for Graft Versus Host Disease rejection. The other day I met sweat girl, Emily, who was 6 months out from her cord blood transplant. It was both encouraging and refreshing to see that she was doing really well with no GVHD. We talked for like 2 hours, and she just explained everything that I would expect and more. I've felt all the pain, nausea, vomiting, weekness, but from what she was telling me it's all I had already experienced x 10. Again, it was an awesome encounter - that we were able to talk on a level and relate similar cancer experiences. We both knew another BMT patient our age, Racheal, and it was cool that we have this little 'Transplant Connection'.

Anyways, back to pros and cons. When they wipe out my bone marrow through expreme chemotherapy and radiation (which I haven't had before), cord blood stems cells more easily accepted into your body. The only problem is that since it's from a baby. I have to start my defenses all over again. These 21 years of built up immunity is thrown out the window. Because of this, I have to be re-introduced to world slowly: getting revaccinated, staying away from big groups of people, and quite possibly. . . . the need for a wetnurse. What can I say? It's a win-win situation. Cheers!