Discharged on Monday, outpatient surgery now

Lucas had platelets transfusion, then Vincristine and Peg-A chemo yesterday before we went home in the afternoon. While he was in the hospital, he was given broad spectrum IV antibiotics every day. I think that's why he had a little stomachache followed by diarrhea yesterday evening. So it's good that we need to be fasting this morning, giving his tummy a break.

I think the hardest part for consolidation phase has passed. Next week will just be Vincristine and lumbar puncture. And the four weeks to follow would be a repeat but with no lumbar punctures - so we wouldn't need to come both Mondays and Tuesdays.

I'm still a little worried that while his Hemoglobin and platelets keep dropping, his WBC did not. Supposedly the chemo should decrease all counts.

I enjoy slow days!

I never thought this would be me since I always seem to enjoy hectic schedules.  But ever since Lucas is diagnosed and we are either home-bound or hospital-bound, I really feel like I can live without the outside excitement.  Today is another slow day bound inside the hospital room -- he has an on and off fever so he can't leave the room.   But he feels fine and the two of us enjoy each other's company in this 150 sq ft space.  We watched Madagascar 2 & 3, Tangled (how could we miss that!), read story books (I keep a sackful always filled with story books that Lucas likes, ready to go 24/7), played card games (well, for Lucas, it's mostly just shuffling and putting them back in the box), and the volunteer got his favorite toy from the play room!  Now he is taking a nap and I get to organize the videos, pictures, and update the blog.  Can you think of a better way to spend a Sunday? :)

Taking 6-MP on his own now! He actually takes it better if not in front of the camera.  I'm so glad he doesn't mind the taste of 6-MP since it will be a daily stable for 3 years.

Whenever he sees my phone, he wants me to shoot videos for him nowadays!

Play with his new toy puppy.  He said he wanted to have a white puppy just like that -- but pets are no-no for him now.

Sound asleep now. :)

The toy from play room that he likes very much -- why can't they make such toys now?  I searched online and just couldn't find one.  This little thing offers so much to do -- a phone that rings and says hello and goodbye, a choo-choo engine that makes sound, a door can be opened and locked with a key attached with a retractable string,  counting beads, a clock with moveable hands, and ABC, 123 shaped pieces!  I hope this toy will stay safe in the play room as Lucas would be able to get so much fun from it!  

High WBC/High ANC

Didn't see that coming since supposedly his ANC should be really low.  But his WBC is 11.5 and ANC over 9500 (for a healthy person, normal range is 1500-8000).   The WBC was 2.9 and ANC 1400 last Monday.  One thing relieving right now is that that all the white blood cells are mature ones (so no cancer cells).  Still it's rather alarming to have ANC change like this considering he has been undergoing chemo and ANC should have gone lower rather than higher.  As we have said earlier, anything that doctors don't expect to see is not what we want to have.  Since the protocol that works very well is designed for the typical cases, we are less confident how doctors handle unexpected scenarios.  The ER doctor who had limited knowledge of leukemia treatment was surely not very reassuring when we asked him Why and What to do.

I did find some information by Google.

http://www.reference.com/motif/health/explain-high-absolute-neutrophil-count

"Therefore, an abnormally high absolute neutrophil count is indicative of a potential threat to the body's immune system or a miscommunication between the body and its internal environment."

It's unexpected that if he has an infection, he is actually producing more good fighting white blood cells. And we haven't been able to identify any other signs of infection. The part after "or" is interesting. So if there's no actual viral or bacteria infection to fight, can ANC be elevated just because the body perceives something that does not exist. So it's a temporary state that we experience when the body heals?

http://community.lls.org/thread/9277?tstart=42

At least it happened to some other leukemia kid before and ANC went back down on its own within a week.

We will have the opportunity to talk to the Hematologist on call today. I hope we will get some reassuring answers to our many questions.

Fever + ER again

He got fatigue and warm to the touch after lunch today.   Temperature was 99.8 for most of the times we measured him.  9pm we measured 101.2 and was way above the 100.4 threshold leukemia patients need to follow.  I quickly gave him 6-MP and packed to prepare for a few days of staying.  Just got port accessed and blood drawn.  Will get IV antibiotics soon together with Tylenol.

Alex's drawing

I enjoy the few trips Alex went out with me to grocery stores. And apparently he enjoyed them too. He is probably the only one who notices when mommy puts on make-up and wears ears on special occasions.