Two videos from last week

Waiting to get chemo last Tuesday so we could be discharged from the one-night hospital stay.

Quite music helps with better play between the brothers!

Another Monday visit

Our little trouper now does very well with port access now.

The sweetest moment for me is not to get up right away in the morning, but rather lie there and hug my little one until he wakes up. He keeps moving into me throughout the night and sometimes we wake up with more than half of the bed empty. :)

Got a home care nurse!

Persistence got paid off.  :)  She came for the first time this afternoon to do AraC.  She will come again tomorrow for AraC and then de-access the port.

Lucas is asking for his mother constantly.  I'm just so special!

Will be admitted for tonight

Lucas's urine didn't clear the first two times -- was 10/12 and needed to be 10/10.  The third time was 3pm and the lab spilled it!  Since the outpatient chemo infusion clinic closes at 7:30pm and Lucas needs at least 4 hours of IV flushing after CPM (just like 4 weeks ago), it's not enough time and he is waiting to be admitted.

We asked to come to infusion clinic for ARAC every day too.  Home care nurse is not readily available.  I did it at home last time.  But after talking to another parent form ALL list, we decided not to do it at home again.  The nurses here kept telling us that they have had parents who are much less educated than us to be able to do it at home.   I felt like I'm being judged today by telling them that I still want to come here to have it done.  I miss our usual nurse practitioner and doctor, neither of whom we got to see today.  Some nurses think that they have to be tough so things can be done in their way.  Showing Lucas's urine record last week wasn't my proudest moment this morning either.  The amount each day is inversely correlated to how much I was away at work.   I decided to buy another thermal bottle and make 3x12oz bottle in the morning for the grandma to make Lucas drink during the day.

The nurse is telling me that since ARAC won't be given today until later, tomorrow we need to wait until later afternoon/early evening to be able to go home(24 hour in-between), if we insist that we don't want to do ARAC at home.   They are really trying to make me feel doing ARAC at home makes much more sense.  But I've made up my mind.   We only needed to use ARAC this week and next, and repeat again during delayed intensification (mid-late June).  We can handle the extra hassle so we don't need to deal with IV chemo at home.

Picture slideshow

First time doing this.  Let's see if it works.

Ready for another round

Same 4 weeks as what we just had, minus the spinal taps.  Hopefully his ANC will be above 750 and platelets above 75 tomorrow so there won't be any delay.

Decreased appetite, etc.

We saw a drastic weakening in appetite last Sunday and it has been going on all week.  Lucas is usually polite and wouldn't refuse food outright.  But he doesn't have much of anything that he is willing to try.  He is better now than when he was in the beginning of induction.   I don't think he feels nauseated or heartburn so we didn't try to give him Zofran or Zantac.  I've been reading a lot of posts on ALL list talking about how some kids' liver are so stressed towards the end of maintenance that they have no appetite and feel tired all the time.  And it takes years for the liver to recover to somewhat normal after they are off treatment.  I always thought the first half year is hardest since the chemo is more intense, but it seems for some everything goes well until the last year -- when the body just has had enough of drugs.

Since Lucas's ANC was 88 last Monday and he hasn't been eating very well, we are prepared to not meet ANC > 750 this coming Monday and have a week of rest.  But the week before he was eating well and looked much less pale and his ANC was 88 -- so I guess my perception has nothing to do with the actual ANC number.  Next week of chemo involves CPM on Monday, ARAC Monday-Thursday,  and 6MP every day.  If we can't get a home care health nurse, we plan to go to clinic every day Monday-Thursday lunch time.  Lucas actually likes the hospital cafeteria food and maybe he would eat more there.

Life is much easier after Alex gets to go to babysitter every weekday now.   MWF he comes home between 1 and 2 to take a nap.  TR he is up playing all day.  I can't tell you how relieved we found this babysitting arrangement.  The babysitter even drives him back everyday and teaches Alex good manners.  Lucas enjoys the craft Alex brings home for him as well (though I was very surprised to find glitter in my bed and found the craft was under Lucas's pillow!)

What we have been up to

The wireless network at hospital was unavailable yesterday -- and that's my dedicated blog update time.  I gave up my cell phone to Lucas who usually needed the ipad for distraction.  I really don't think it's well designed that even for movies that I downloaded on iTunes -- i still need to connect to wi-fi to be able to view them!

Lucas has been doing well for the most part:
-- He lifted his shirt up and was relatively calm when his port got accessed yesterday.  I didn't need to have him sit on me and use my legs and arms and hands to completely restrain him.  I thought of knew it was going to be easier in the morning -- I didn't need to sit on his lower body, having my knees hold his arms, when I applied the numbing cream.  I think the reading of "Chemo to the Rescue" book is finally helping.

-- Lucas recognizes Shaina, his nurse practitioner, by name now.  He also remembers Cindy's name.  And he remembers Jessica from in-hospital stays.  So he got three names down finally -- which is superb for a mostly non-English speaking 2-yr-old.

-- ANC went back to 88.  This number needs to be 750 next Monday or his chemo will be delayed for a week.

-- Both hemoglobin and platelets went up last week.  He was eating well last week until the past Sunday.  Since Sunday, we saw an obvious drop in appetite.  He is still active, but not eating as much.  He would even gag on even a little bigger bites.  Today's dinner time for him lasted almost 2 hours -- without much intake after all the efforts.

-- We have one more thing to record now -- his excretion of liquid, time and weight.  He didn't pee yesterday until 3pm and the doctor was obviously worried about his not-so-soft tummy when she did his lumbar puncture at 2pm.  We had to stay longer after chemo and spinal tap yesterday to monitor his bladder.  At 3pm, he peed for about 200 gram.  Ultrasound right after that showed he still had more than 200 ml in his bladder.  One of the major chemo med, Vincristine, has the rare side effect that could weaken bladder muscles.  We felt Lucas was like this before (probably an aftermath of unsuccessful potty train episode before the diagnosis) so the doctor let us go home without him completely empty his bladder.  Now we need to make sure he drinks enough (40oz/day) and have enough output as well.  Today's count is 767gram so far (give or take, since we don't weigh the diaper when it has both peepee and poopoo in it).

-- We celebrated Chinese new year by watching a few Chinese cartoons on youtube.  I finally introduced Monkey King to them.  Daddy told them they have the same last name as Monkey King and they think it's rather magical.  :)

Love the ALL mailings list

I signed up a week ago and I'm addicted!  I like our doctor as she is very responsive and gives very good explanation of things -- she is very assuring and precise and knowledgable, and explains things in a way that a layman like me can understand.  But it's good to have a place where I can ask questions to other parents and get their responses -- their individual experience and what they were told by their doctors.  I found that super super helpful.   And I'm glad to be active on that list to answer other people's questions and share our experience and opinions.   There is link to the mailing list if you are a ALL parent reading this blog entry and not on that list yet.  It's a must!  :)

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.