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.