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.