I'm Still Here

It has been MONTHS since my last post. That means there is a LOT of ground to cover. The bad part about that is that I can’t go into very good detail. It’s lost to history, but I’ll try to remember as best as possible.

Groundhogs Period

Rewind!!! That’s right! Now where were we? I think I was just getting out of going back to the hospital because of a fever. After that, I was in a routine of going to Dana-Farber 1-2 times a week to get blood and/or platelets.

At home, I was confined to my upstairs because my body was really banged up. I had been lying in a bed for 5 months, and mobility was not very good. So my upstairs was where I did everything, even eat. I started gaining strength slowly, by walking back and forth, up and down the hallway (how boring). I was doing some artwork and playing some videogames (something I didn’t really have too much time for when I was in school) and basically sitting around most of the time. The artwork I was doing was finishing up the collaboration and a project that was started last summer. After I finished the concept art, I kinda got burned out on it. I kinda got burned out on everything, but I’ll explain that later. I also routinely practiced some general basic perspective drawing.

I think I discussed how my feet would swell up a lot, so I was always trying to keep my legs elevated. I was on low dose Morphine, Lyrica, and Capsaicin cream to help with the pain and burning in my feet. Despite my feet, I gradually got more physically active. My parents and I would take really short walks outside in the freezing weather, when I felt up to it. Stairs were still a big issue for me. My parents would be on either side of me while I descended the stairs (which was much harder than climbing stairs, because balance). Sometimes I would ride our stationary bike. I read some comics and a couple of books. I just found things to do. I’m usually good at that. I still had pretty good enthusiasm.

By around the end of March I was going to Dana-Farber less frequently, just every other week. I think I also stopped going to the Psychiatrist. I remember telling her how all my days started feeling the same. I felt like I was in the movie Groundhogs day. I spent every day stuck in my house unless I went on a short walk in the cold/snow or went to Boston at Dana-Farber. I only saw my parents, but if we did go out in public, which was very rare, I’d mask up and glove up (I still do and this is before H1N1 swine flu craze). I just started losing interest in everything. It’s not like I haven’t felt this way before. When I first got sick, back in 2005, the initial intense treatment period was 6 months. Somewhere in there I hit a dark time. This time felt a little bit the same as back then. However, this time was a lot longer.

I had very few visitors during this time. My oldest brother Keith made yet another surprise appearance, because he was in between jobs. That was fun. I saw my cousins in Hartford. One of my best friends, Aaron also came by when he had time off from school in Boston.

My nails were falling off (I just had to add that in there because I took the picture back then).

Oh and I was in this newspaper: St. Baldrick's Article - correction, I have never ran a 4:20 mile, my PR is 4:27

(Good job Darren! Sweet transitions, man my writing is FRESH!)

Transition

Somewhere in May I finally started getting over the “Wow, this really sucks”-phase. I started walking every morning without the assistance of my parents. At first it was ¾ mile, and then 1.5 miles; now I go between 4 and 4.5 miles every morning, rain or shine. I could go farther, but the runner in me already says that walking is ridiculous. Walking 5 miles or more is ridiculous for me. Sometimes I’ll also bike later on in the day. I told Dr. Antin that I’d be at least run-walking by the end of the summer. That hasn’t happened yet. My excuses are that I my feet are still very numb from the ball to the toes and that my flexibility is bad. And now I got this man-purse again, but I’ll talk about that later.

When my brother Kris graduated grad school and came home, I went out a little more. We went to a couple of movie matinees. The coolest thing we did was go to the Norman Rockwell Museum, which isn’t too far north of Springfield, MA. Really good museum! He’s inspired a lot of artists/illustrators I like. The funny thing is though that my dad called the place and asked what day there wasn’t going to be a lot of people. So we show up they day we told us, and we see like 5 school buses in the parking lot. Awesome! Just the people I want to be around if I don’t want to get sick – kids!

I started going to Boston less. Every other week turned into once a month. My blood type changed from B+ to the dominant cord donor’s: A+. It’s kind of weird having a new blood type. I also didn’t need any more transfusions; all my counts are still slowly rising. There is one count in particular that has been rising rather steadily, without decreasing, these past 3.5 years I’ve been dealing with cancer. Iron. With each blood transfusion I have gotten over the years, I retained a little Iron that has no natural way of getting out my body. My Ferritin levels were around 5000, 10x what would be considered acceptable. As a part of the iron retention study I’m involved in, they do MRIs. The most recent one I got showed that the Iron was retained mostly in my Liver and Skin. Dr. Antin thought this was good, because there wasn’t any in my Heart, but I still needed to get the Iron out somehow. The big problem, as evidenced from CT Scans, is that there is still something in my right lung. He believes it’s still a fungus, and when you start moving Iron around, it attracts fungus. He liked how it

was encapsulated in the same spot, while very slowly deteriorating from the Voriconazole (VFend – anti-fungal) I still take. So there are 3 ways to get the Iron out; by IV with Desferal, a powder you mix in a drink (I forgot the name), or phlebotomy (or what I like to call the ‘ol blood-letting, we joked around about using leaches). The first two had the potential of inciting the fungus in my lung, while phlebotomy was the safest. All I had to do is give blood, but my Hematocrit isn’t high enough to do that yet (I can’t really donate blood anymore because of my history, but it’s the same process). So there was the dilemma, and we decided to just wait it out.

Getting Delicious ‘Wit it

So I continued to get hungry and motivated to do things again, instead of looking out my window, watching the world go on without me. I started getting more inspired to do some illustrations. I even decided to do a special one to commemorate day 250 which coincided with an appointment. My social worker Tammy bugged me every time I went to clinic to do some sort of caricature of Dr. Antin. I decided to include all the people I saw most when I went to Dana-Farber. I also wanted to poke fun at Dr. Antin’s infamous phrase for other patients, “I don’t think that is such a good idea.” Although he hasn’t really said that to me, because I already know what I can and cannot do, I still thought it might be funny for him. The idea to actually execute the illustration didn’t actually occur until like 3 days before I had to get it done. So I spent part of one day planning the concept and the composition. I spent the next 2 days doing it. I framed it and gave it to him for that visit. He liked it a lot and put it in his office. Consequently, the other players in the picture wanted a copy too.

That visit was special in some other ways too. The visit started off with a CT scan, to see the progress in my lung. The scan result showed that, the fungus or whatever it was, was shrinking. Dr. Antin talked with the infectious disease doctors and believed it was alright to start getting rid of the Iron in my system. I decided to do the Desferal IVoption until my Hematocrit was high enough that I could give blood. The Desferal runs 24/7; so that means I got this darned man-purse again (alluding back to those Penicillin days).

My counts were high as well – the highest they have been in, well 4 years. My white blood count was 4.8, which was the highest I’ve seen since I started following it. While on maintenance chemo (while at school), I was always kept at 2 to 2.5. Normal range is 4.3 to 10.8.

The other special part of the visit is that it was videotaped. The Brigham & Women’s/Dana-Farber joint communications program was doing a video about cord blood stem cell transplants. The aim of the video was to try and get pregnant mothers to donate their baby’s umbilical cords for stem cell collection at birth. Mike, who was making the video, taped the whole process, from collecting the umbilical cord at birth, to extraction and storage of the stem cells. I was the final piece to the video. They needed a face of someone who’s benefitted from the process. After my doctors visit, my dad and I were interviewed about our experience. I briefly described my whole ordeal with Leukemia/Lymphoma, starting with that horrible summer, when we moved up here to Massachusetts from Kansas City. It reminded me of the decline of my health, starting probably in March 2005, towards the end of my senior year of high school. I think I might do some sort of Blog entry of my cancer experience before I relapsed and revisit some of those times.

“Here and Now” by Luther Vandross

I’m just playing. I’m not going to talk about the legend Luther Vandross and his Grammy award-winning song, but about what I have been doing as of late. After I did that pseudo-comic book cover for Dr. Antin, it spurred some other ideas I had for stuff. That process immediately got hi-jacked when my aunt and her grandson came to visit. Ah, the joys of entertaining a 15 year old boy. I usually don’t use Photoshop to modify pictures, but it kept him happy, so what the heck. Here are some of the things I did for him.

After they left I finally did some pieces for myself. Here are some: The Flash v. Captain Cold, and Cadillacs & Dinosaurs.

I still religiously do my walks in the morning. Now I have company to do them with, since my brother Kris is living back home as of last weekend. I have another face to look at now. I’ve started an online course to get me ready for my return to school and I even started formally learning my mom’s language like I said I would when I first started this blog. In order to become kick-ass, I am also practicing my draftsmanship again.

The next big thing for me is this Jimmy Fund Radio-Telethon I am doing August 28. It’s a cancer fundraiser, with doctors, patients, caregivers, baseball players, and some high profile celebrities. I guess the Red Sox are playing the Bluejays that day, so tune if you are in the area. I’m supposed to talk with Dr. Antin.

That’s about it for me. My friends back in Lawrence, KS are doing another Light the Night fundraiser for the Leukemia & Lymphoma Society. Sadly, I won’t be able to attend yet again, because it’s too early in October for my year mark, which is Halloween. Check it OUT!

It’s day 285 since my transplant, and 1360 days since I heard, “you have cancer”. I am still here! Last Friday, August 7^th, was the anniversary of my relapse. It was a different time a year ago. I just moved into a new apartment by myself. I was about to go to a woodturning workshop I got a scholarship for in Aspen, CO. The Fall semester was also about to start. I went in for a routine blood draw, and BAM, relapse – let the fun begin. I was in bad shape. I remember the words vividly, “statistically, you have a 10% chance” from Dr. McGuirk’s mouth. Back at KU Med, waking up every morning at 4:30 to walk and get lost inside the halls of that complex before people started trickling in. The donor search. My lung collapsing. The Hope Lodge and my non-stop RV trip up here to Massachusetts. And finally, the fun times I hardly remember at Brigham & Women’s Hospital in Boston.

I am still here.

A Long Time Coming For You

It has been a long time. What, almost 2 months since the last post? October was the last time I actually posted, so let's see if I can get this right. I've gone through a lot since November, but unfortunately I probably wont be able to go in as much depth as I'd like to.

More Hospital Time, but the end of VOD
So in late November, I was still suffering from all the complications of VOD (Veno Occlusive Disease). I developed the disease from the series of total body radiation I got. Along with peeling skin, extreme itching, and straight up pain, the VOD was the worst. It was hard to move around because I felt like a pregnant woman with my big gut. The huge belly just got in the way. Ironically, eating more was supposed to help with my messed up liver and, in turn, shrink my big, fluid filled belly. The doctors, especially Dr. Ho, said to follow what the dietitian says about what I should eat. The thing was though, is that I didn't have any appetite, so some anger developed on my part that I'll describe later.

Well something worked and my liver functions kept coming back better and more normal. Along with that, my belly and feet started to shrink, the built up fluid leaving my body. Everyday during rounds, the Dr.'s would be impressed on how much better I was looking, especially commenting on my belly.
I could finally touch my knee to my chest! My feet, although they shrank from sasquatch-size, still hurt. I'd get these cramps and knots that I had to try and rub out, but immediately after messaging a knot out, it would come back. I first noticed it when I was getting my weekly uncomfortable ultrasound of my liver. My heels started cramping up bad when the technician was rubbing my chest with the gooey stuff (sometimes scolding hot stuff). The nurses tried to give me oxycodone for the pain, but it didn't touch it. I did have a fetanyl pain pump, so I was pressing the button a lot for relief.
(no, there is not a pillow in my shirt in the before/after photo)

Turkey Time!
Too bad I didn't get any turkey for thanksgiving. My older brother, Kris, came up from grad school at VCU to spend Thanksgiving with us. It was awesome having him around, not just for the company, but for the help in taking care of me, giving my parents a break. Kris would go on my walks with me, and that was better than doing those walks with my mom, because we could catch up and have good conversation. Kris also brought something he had been working on at school. He and some classmates entered a film competition, a competition against some serious professionals too. Mind my brother; he's in drag - http://www.filmchallenge.org/vote/pockets-full-of-love . They won best use of the Romance Genre and a special award for my bro dressed in drag - awesome! We also spent some quality time watching some tight flicks too, like Breakin' 2: Electric Boogaloo and Kung-Fu Hustle.
On Thanksgiving, our Boston friends Kenn and Mac brought dinner... for my family. I had to eat hospital food. mmmmm. Kris is allergic to turkey, so he ate some cafeteria food along with some other food Kenn and Mac brought. I think they enjoyed the dinner. I enjoyed my bro's visit. He left that weekend - back to school.

My dad surprised me pretty good the following week. My oldest brother, Keith, came up to visit for the week. I was the only one who didn't know. Even my nurses knew. They would get to know about him even more too, because he's crazy. He jokes around a lot, and he did it by hitting on the nurses (Alicia if you're reading this don't get mad, you know how he is - fearless) and telling me which nurses' digits I should nab. Keith and I watched some tight flicks too. He introduced me to Kung-Fu Panda and Tropic Thunder. Tropic Thunder is one of the funniest movies I've seen lately and Kung-Fu Panda was surprisingly good. I always thought Dreamworks Animation milked Shrek for all it's worth and has had some mediocre films since Shrek's success, but the Panda movie was good. Keith walked with me just like Kris did as well as shown in the picture (I got the nasty look on my face like I just got a whiff of something super smelly, but I was exhausted from the walk). He left back to Kansas City at the end of that week.

Both brothers witnessed my battle against eating, against food. I still fight this battle up until now. The dietitians made it so we had calorie intake sheets, where we would write what I ate, when, and how much calories were yielded. I was constantly pressured to meet a daily goal and we tried to find shortcuts to meet these goals. The shortcuts usually involved some sort of milk product because they got all 'dem calories, so me and chocolate Ensure became good friends. For the dietitians, that wasn't enough though. They thought they could get more calories out of less. They had me try different milk products, some that were mixed, like frappes (New England talk for milkshakes), and others that weren't, like Carnation Instant Breakfast, all of which I vomited; each one I threw up hard! Who likes throwing up? I know I don't and I didn't like throwing up hard either. It hurts. Because of this, I associated my anguish with the dietitians, and began to dislike their visits and their suggestions because none of them worked. I mean it was their fault, right? I don't know, it wasn't very encouraging when you fight yourself to get in over 1000 calories in (which was super hard), and they say it's not enough. I felt as though they expected me to take in 2000 calories after not being able to eat anything for a week, due to the esophagitis and mucositis. Anyways, enough ranting about how I dislike the dietitians.
My eating problems, combined with my general lousy mood prompted my dad to ask the doctors to get someone I could talk to about my problems. When the psychologists came the first time, I felt sick and was vomiting hard, so they rushed out and came back the next day. I've always felt weird about talking to a psychologist about cancer and how it's affected my life. I've thought about seeing the someone on campus, but I still felt that social stigma that people who see shrinks have problems, so I never made time for it. Looking back, it made sense because I tried to mask the fact that I had any problems, or at least fight them and not give in to their side effects. The truth is that I did need someone to talk to. I've kept all that I have been through bottled up for too long. I had been in hospitals for too long. Who wouldn't feel down? (since the relapse I've been in hospitals since Aug. 7th)
I think talking to the psychologist helped. I finally discussed how some things actually made me feel and I'm not gonna lie, I cried some. I had some symptoms of depression too. When family or friends came, I was super apologetic. I didn't want them to see me in this state. I'd get emotional because I was sorry that they had to experience me at my worst (I thought was my worst, my bro thinks it's at my best, as I'm fighting this disease). I had to let that go. We also discussed my history with cancer, being a patient-student for the past 3 years, and my eating troubles. I got put on this medication called Remeron that is an antidepressant that also helps with sleep and appetite. Wow! Something to solve all my problems!!! (not really)

Sayonara Unit 6A!!!
At the beginning of December, there was a lot of talk floating around of my discharge. I had to be more self-sufficient though. I had to be able to be off the TPN (Total Parenteral Nutrition) IV. The TPN line was basically like a feeding tube. It had all the nutrition I was and wasn't getting: all the protein, sugar, fat, vitamins and minerals one needs. The first time they tried to take me off of it, they had to put me back on it shortly after because I wasn't eating enough. So I had to get it right the second time they took me off the TPN, despite my vendetta on eating. It was difficult, but I'd have to be able to sustain myself. I needed to be able to do this before Christmas. I remember when I first got diagnosed 3 years ago, I spent Christmas in the hospital. We celebrated the holiday like three days after. My birthday was coming up too
(Dec. 15th), so I made it my goal to get discharged then. That meant I had to eat up and I did. My discharge date was set for my birthday.
I had some visitors before I left. Without me knowing about it, Pastor Greg from the Church of the Acres in Springfield came up to Boston to visit me. I've only met him a handful of times, so I was shocked to see him. And he brought a friend, Saxophonist Greg Wilson, who played a couple of Christmas tunes in my room, live! http://www.myspace.com/whosjoewilson The nurses and other coherent patients were shocked because the songs came out of nowhere, but they enjoyed it a lot. They liked it even more when Greg and Joe left me 30 of Joe's CD's to hand out to whoever was around. That was pretty cool.
I had two catheters in my chest. I had to get one removed before I left the hospital. Usually they put one on each side of your chest, but I had both on my right side, because back at KUMed, I had that blood clot in my left side. So it's December 15th, my birthday, and the radiologist comes in with a fellow or resident who's going to perform the operation. I've had a Hickman catheter in my chest before
(3 years ago) and I was put to sleep when they put it in and when they took it out. With these catheters I have now, they put me to sleep before the operation, but I'm awake when they take it out. Don't worry though, they shoot me with Lidocaine, so I wont feel a thing... so not true... It hurt like hell!!! I was groaning and crying throughout the whole thing. No matter how much Lidocaine she shot into the site, it still was excruciatingly painful just the same. The Radiologist was trying to calm me down while the fellow was having trouble getting this notch in the line out. When she finally got it out, it was the most painful part and I yelped, "Happy Birthday to Meeee..." I never want to go through another line pull awake again and I still have the other line in my chest. I'll tell them to go to hell if they try to pull this one when I'm awake. The line they kept was the one I got TPN through, while the one they took out was the one with the IV Tacrolimus going through it. Tacrolimus or Prograf or FK 506 is the anti-rejection drug I'm on pill form now. The reason they take out the Tacrolimus line is that it is really sticky in IV form and sticks inside the line.
After the procedure and some administrative stuff I got to finally go home. It was day 45 and I also had been in Brigham and Women's hospital for about 60 days. What a relief, but I was sort of anxious about going home, because I wasn't under the 24/7 watchful eye of nurses and aides, well, some aides.
I had an incident with an aide one night. I had a new nurse that night as well. I don't think you could say that you successfully went through a stem cell transplant without having at least one 'accident'. Yeah I didn't make it to the bathroom in time several times during my hospital stay. I even pooped my pants. Yeah laugh it up at the poopie pants guy... Anyways, on this night I was doing the P.P.Pants dance really hard and I had to rush to the restroom. Before I could go, I had to get my IV lines untangled and put on my slippers. By the time I reached the restroom I had to urine into a urinal, (not the toilet because they measure my output) but my hospital gown was in the way. I ended up not just soaking my gown, but getting a good deal on the floor before I could get my stuff into the urinal. When I was done, I pulled the nurse help chain and another nurse gave me a change of clothes (she was from KC, Shawnee Mission North class of '69). When I was all changed and cleaned up, the aide came in the room to get my vitals. She got my vitals, but not after knocking over my drink carelessly and with an attitude like I owed her something. She also went into the bathroom the record my urine output, but she didn't clean my mess, which is her job. So for the rest of the night, I had the door wide open with the light on. I made it obvious that she needed to clean it, but each time she came in she turned off the light and closed the door. She knew about the piss on the ground and didn't do anything about it. I made it a point that if she was my ever my aide again, I'd use my right as a patient and refuse her care. Luckily, I didn't have her again.

Home Sweet Home?
Yes, I got discharged. What an awesome birthday present. Being home, although weird, was a nice change of scenery. The weirdest thing was the bed. I didn't have the cool hospital adjustable bed anymore. Luckily, I prepared for this change in the hospital by sleeping with the adjustable bed fully flat. The day after my discharge, my older brother, Kris, came back for holiday break. I was glad he was back - I'd have someone to hang out with.
Part of the adjustment to home life, was the fact that I had to return to Boston weekly for appointments. My first appointment at Dana-Farber was that Friday, but there was supposed to be a big snow storm that evening. We decided to see the doctor Friday morning and get the bloodwork done, spend the night at a hotel, then I'd get infused that following Saturday. Logistically, it was difficult trek, because hotels aren't the cleanest place, so I had to be careful and my family cleaned the room.
Things didn't go as smoothly as planned come Friday night in the hotel. I was feeling a little chilly and my parents were acting all paranoid, so they checked my temperature. I had a fever of over 101. My dad called in, and I was supposed to get checked into Brigham and Women's hospital again in the morning. I got lucky, as I was put in the same unit, 6A, where the nurses and doctors knew me.
When I got back to the unit, all the staff was like, "You missed us?" Well, I kind of actually did, haha. I only had a fever for that day, as I felt normal for the rest of the weekend and I was discharged again that Tuesday and home for the week of Christmas.

I have accumulated a lot of mail. When I was in the hospital, it decorated my room. I still got a lot of mail when I was discharged. My brother even brought some from school. So thanks to everyone for the gifts, kind messages, thoughts and prayers. It's been rough, so it really helped!

The New Routine, a Day in the Life of...
I feared the day Kris would leave, because then I would have to hang out with only my parents for the year (oh nooo!). That day came Monday, Jan. 5th. But luckily later on that day my friends from school, Thornton, Jesse and Connor, coordinated a visit with me on their road trip. We hung out for about 3 hours before they had to go to NYC. I wish we could have done more, like a tour of my small town of Wilbraham, or play some video games or something, but time and just my health limited our rendezvous. My medical staff was really cautious about me having visitors, so we all had to mask up and wear gloves (which I do whenever I go out in public anyway). Sadly, it was my last contact with civilization, before my mom and my dad took over. Thanks again guys for the visit!

So today is January 25th and I'm on day 86 from transplant. I'm in a groove now of doing similar things everyday. My mom wakes me up to pills at like 7am. Then I go back to sleep for an hour. She wakes me up again with breakfast and it's accompanying pills, which is a lot. I then go to our bonus room (in New England, there's a style in some houses, where there's an extra room in the upstairs called a bonus room, where you can make it into whatever - a game room. bedroom, guestroom, etc.) and I get on the laptop, watch some TV or read. After that I will exercise by walking back and forth in my upstairs or riding the stationary bike, or both. I spend time with my parents in the evenings. I also have my mom help me shower in the evenings usually. I sit down and use the hose attachment because I'm still weak to stand and do it (I might be able to now though). It makes me feel like a geezer. I take a ton of pills in the evening too before I sleep, which is usually around 11pm now.
I go to clinic in Boston once or twice a week, depending on how I am feeling and how my counts are looking. It is about an 80 mile drive to Dana-Farber and it takes a little less than an hour and a half to get there if there's no traffic. The place is usually really packed, so I try and stay away from people (I mask up and wear gloves because I'm out in the public). We usually have to wait a long time, probably an hour after our scheduled appointment times. Then if I need blood products, we wait even longer for them to arrive after Dr. Antin or Julie (the nurse practitioner) orders them. The blood products, especially red blood, take a while to get infused too. Basically, the days I go to clinic can be very looooong (like this blog post). I usually have something to read while I'm there and my mom brings food from home, so that I can eat. We recently discovered the Blum Patient and Family Resource Center, which is basically like a cancer library. They have got TONS of material - books, pamplets, videos, helpers and just a lot of stuff. I drew for the first time in a long time while I was there, because there is an arts and crafts room. The lady that runs it hooked me up with some paper and a pencil set and I did this. I was super pissed when I was drawing because I have the shaky hand thing from one of my medications. I couldn't draw straight. Oh well, at least I am still able to hold a pencil.

So when I get infused I usually get red blood, platelets, and/or magnesium. They like to do red blood transfusion when my hematocrit is at 25 or below. They like to do platelets when it's at 11
(thousand I believe) or below, so I don't bleed. I've been getting a lot of transfusions lately. It's been every visit. It takes a long time for cord blood patients to fully graft so that's the reason I'm not able to adequately produce enough blood. My blood type also will change to the surviving cord's type, and that's happening right now, although it hasn't changed yet. I'm still B+. It'll either change to A- or O, because those were the blood types of the two cords I got.
After clinic visits I still get swollen feet. It's because I get more fluid in my body, so I try to elevate me feet as much as possible when I get home to get rid of the Sasquatch feet syndrome. Other than that there's not much going on with me. I'm still having trouble eating, but it's getting better. But I really need to end this blog post, it's getting long and I'm tired of writing.

Oh, one more thing...
I GOT HAIR!!!!!!!... and a nasty mustache if you look close enough...

Misery, Thy name is....

DK’s dad here....

If you were to ask DKDelicious how it’s going. You might get the usual Darren smile and an “OK”. But it’s also quite possible you will see and hear what misery is. Misery is daily low grade fevers and associated chills. Misery is being so tired and week that you huff and puff just going to the bathroom or getting up to take care of your teeth. Misery = uncontrolled itching.. And misery not wanting to eat…only to have your mom shovel it down as only a Filipino mom can do and even if it’s Gerber Graduates.

3-weeks down and counting
We are now at beyond day # 21. Yeah!!!!!! We’re starting to see him produce his own blood cells. The white blood cells finally started to register some growth and doubled for the next 3-days. Right now, they have plateaued…which is expected with cord-blood stem cells.

Return of Sasquatch
Veno Occlusive Disease is when you have clotting in the small vessels in the liver which causes the flow through the liver to reserve. When this happens, fluids collect in other places in the body and there’s significant weigh gain. This is what happened to DK over the last couple of weeks. In 5-days he picked up 30-lbs…all fluid. His belly was extremely taunt from the fluid collecting all around his abdomen…and very painful. This fluid also settled in his legs and feet. He has Sasquatch feet; they are "ginormous" … and painful to the touch. But he still finds the stamina to walk on these huge stumps…and occasionally he “busts a move” (dances).

Goodbye Little Darren
DKDelicious had a rough day on Friday the 21st. He was up all night racked with pain, which rolled across his belly in waves so high that we often shouted in agony. Hard to watch, and even harder for him to experience it. So after an x-ray, CT scan, and ultrasound and given his counts were all still moving in the right direction, the medical team decided they should tap his tummy. By doing this, they removed a liter and a half of fluid. This allowed him to say bid farewell to his protruding belly, which he nicknames “Little Darren”. He is a lot more comfortable now.

My Story…
On Thursday, November 20th cover story in The University Daily Kansas as story about DKDelicious’ journey to date. http://www.kansan.com/stories/2008/nov/20/living_and_laughing/. It’s worth the read and compliments much of what he shares in this blog. He is particularly excited about this being an opportunity to raise awareness about transplants and leukemia.

A Changing of the Guard…This week was rotation time on the BMT ward. A special thanks to Dr. Stoiffer (co-chair of the BMT program), Dr. Bhlatt, and Dr. Ghoroghchian (aka Dr. G.) for getting up through the first 3-weeks of this journey.

Thanks again to all the folks out there who have been praying for us and reaching out to offer support. Know that your prayers are making a difference and support is greatly appreciated.

DKDaddy out.

Week One Done and Gone...and Still Dancin`

DK's dad here...

What a week! An new president and lots of challenges in the transplant battle.

Shin Bone Connected to the....

Shin bone pain was a major issue for DK. He had daily visits with pain that required medication to give him relief. It started out with a kind of dull pain in those long bones (and if you know how tall DK is, those bones are very long...smile), and escalated to a sharper pain that included his knees as well. Thank God for pain meds.

Juicy....

Another major challenge for DK was his bout with mucositis (inflammation and irritation of the mucous membranes) in his throat and down into his tummy. Very painful..... As a result, he hasn't been able to eat anything or drink much in several days. He's getting nutrition and fluids intravenously through the direct line in his chest. Another side effect of this situation is excess mucous that he can't quite clean on his own, so they gave him a suction tube to help keep on top of all "juicy stuff" he keeps manufacturing. In short, this situation literally sucks.

Fever's Back....

After a week of no fevers, he started spiking fevers again yesterday. So far the blood cultures aren't showing any kind of infection. They did another CT scan, which showed that the pneumonia has greatly improved....but also show a little swelling on his liver (which they will continue to watch). Bottom line his pneumonia is better and they're not sure why he's having fevers...which could be just because he's so darn HOT! Smile.

Still Dancin`....

When he's feeling good (relatively speaking), he's on the phone, watching the worst, low budget movie on the SciFi channel, and/or he goes for walks on the ward (back and forth; back and forth). When he's feeling really good (really relatively speaking), he dances. Yes folks....he dances. It ranges from demonstrating a recently created dance in honor of one of his favorite nurses (note that all of them seem to be his favorites) to treating some other patient's visitor (who happened to come upon the demonstration) how to do the basics of popping and locking. Of course, his mother is always a candidate for a boogaloo roll lesson...too funny. One evening he called out one of his nurses with a step he created on the fly just for him. The nurse, "MJ", threaten to recommend him for a psychiatric consult. Too funny!

He's into week #2. Please keep him in your thoughts and prayers. We want no infections and those stem cell to hurry up and graft. Blessings....

DKDaddy out!

New Birthday....

Hi World.... Dad here.

DKDelicious had a very busy week, ending with a new birthday. Last week he had two doses of radiation to the head, seven rounds of full body radiation, two days of high dose chemo, and another (the 3rd one) bronchoscopy. He did quite well through all of these procedures.

The big news is he received his new stem cells yesterday....Yea!!!!!! So now he has a new birthday....Halloween of all days. Pretty neat for a kid who loves scary movies.

The other big news is the bronchoscopy revealed that the cause of the latest pneumonia (finally....) was a bacteria. It also showed that the bacteria is in declined...apparently they've been using the right medication to beat up this bug.

This week also brought some nice touches....a call from the University of Kansas head track coach, Stanley Redwine; flowers from the KU athletic director, Lew Perkins; and banner from the cancer walk from his classmates at KU. The banner was 10-ft long and signed by tons of KU students.

So what's next? We wait. We wait for the stem cells to graft and build new bone marrow.

Thanks for all the thoughts, prayers, and support. Everyday we see a miracle.