Another day, another transfusion

Lucas's platelets was 10 on Monday and got one transfusion.  Today's check-up is an add-on and recommended by the doctors as they think he might need a transfusion by now.  And yes he did.  His count was only 8 today -- really scary if you think about it.  A healthy person has platelets between 150 and 400.  His hemoglobin was low as well, 8.3, but I told the doctor that we would wait until next Monday and see if it would go up on its own.  I guess now I understand what the doctor meant when she said the chemo would "wipe out" all the counts.  I asked when we will allow him to recover on his own -- as the protocol asks for recovery before he can start next round (we still have 1 more week left for this round, Vincristine only next Monday).  The doctor said as long as they see his platelets stabilizes into 20s, they will let him recover on his own (need to be 75 before next round).  His ANC needs to be above 750 before next round.  We hope he can recover soon.  He is eating better for sure and hopefully that will continue.

A long day at the hospital

Lucas's platelets was very low -- 10. So he had platelets transfusion today. And since today he is due for Peg-Asp, the chemo that tend to have most allergic reactions, he had to wait one hour in-between and stay one extra hour afterwards to be observed. Despite the fact that we spent 9am-5pm in the chemo clinic without a nap, Lucas had a pleasant day with good appetite and playing spirits. We watched four movies -- Shrek 4, Little Mermaid 2, Thomas (the one about discovery of the lost town), and Polar express. Lucas didn't really pay attention to the TV much, but he wanted it to be on when he is at the clinic. He had fun playing with clay, he used clay to make hats for everything the volunteer and I made for him--a hat fir each leg if the crab, ect.-- just so you get the idea. He also showed great patience doing the jewel-gluing craft session. I'm really grateful that my two boys still enjoy story-reading, role-playing, coloring and crafts. I will feel sad when they grow up to be only interested in computer games. We made some friends too. A 4-year-old boy named Luke who has T-cell leukemia and 2 months into the treatment. It's hard to believe that we are almost 3 months into it.

It was surprising for me that his platelets are so low. This is a repeat of first four weeks in consolidation and his counts weren't this low before (we are in week 7 of 8 weeks of consolidation). Doctor said that the cumulative effect is working as expected and usually platelets is the last to come back. They wanted him to go have a blood test this Thursday to make sure his platelets isn't dangerously low again. We did go to the clinic last Thursday and he ended up needing blood transfusion. I really hope the counts recover on their own and he wouldn't need any transfusion at least for the next two weeks before he enters Interim Maintenance. Each transfusion has its risk and burden on the liver. We just have to knock on wood everyday that Lucas will be strong enough to handle it all.

Lucas learned posing for pictures!

He wanted pictures to be taken with the balloons he got today.  He looked at each balloon very carefully and have been carrying them around with him diligently.  Many thanks to Wei who sent balloons this afternoon, together with toys and fruit custard pie.  They liked fruits and the crumbs -- and left the custard to me.  :)

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.

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.  :)

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.

A few cute moments

(1) Our out-patient nurse practitioner, who we see more often than our doctor, is an attractive young lady.  When she tries to examine Lucas, Lucas is quiet and cooperative for the most time.  But Lucas always dislike his ears being poked at.  This young lady had her way of doing things.  She observed that Lucas was wearing a thermal with Cars characters.  And when she looked into Lucas's one ear, she would say:"Is Lightening McQueen in there?  Oh, I hear Zoom Zoom Zoom."  And to the other ear, "I think Mater is in this one."  Lucas would then let her do her thing.  Later that day, Lucas asked me if the "boot" lady would come again.  I didn't know what he was talking about.  Then he started saying Lightening and Mater in his ears.  He told me it was the "boot" lady instead of the "shoe" lady.  Then I remembered that that nurse practitioner almost always wears boots.  So ladies, watch out!  You are either in the exiting "boot" camp, or you are in the boring "shoe" camp.  :)  I learned quickly and started using Cars/Thomas conversation when I try to brush his teeth!  :)

(2) Lucas found his favorite toy from the in-patient kids playroom today.  It's a infant/toddler toy with an old fashioned play phone.  I caught him making phone calls.  "Hello? Grandma?  I'm at the hospital. Something wrong with my tummy (he kept thinking the installed port in his chest is what makes him sick).  I'm feeling better now and I will come home soon.  Please cook stir-fried rice for me!"  He would repeat this phone call many times.  I pretend not to pay attention as he would stop shyly if he noticed that I was looking at him.

(3) Our Monday visit started with outpatient chemo clinic.  At first there was more patients than the number of TVs and we didn't get a spot with TV.  The glare from iPad was so disturbing, and Lucas was just hooked on IV fluids, waiting for his urine to clear.  We felt the toys in that play area is not cleaned as diligently as the inpatient place so we didn't let Lucas to play with the toys there.  Instead, we were taking stroller rides around the area.  And we were talking about how many kids there are and all TVs were occupied.  We finally got a TV spot at around 1pm.  And Lucas fell into sleep in the couch at about 3pm.  After a cat nap, he woke up, looked around, and asked me:"where did all the other kids go?"  I told them they have all left and the sooner he could pee the sooner we can go home too.  He sadly said:"I don't want other kids go home.  I want them to be here with me."  Even though on the surface Lucas didn't care about other kids and always looked away when we talk to other parents and kids, he still needed the company.

(4) The editing of this post lasted for almost whole week!  So I got the last one for you from Alex.  Alex and Dad were cuddling Sunday morning.  Alex suddenly told Dad:"I like the wife you married."  Dad was taken by surprise:"Who are you talking about?"  Alex replied:"Crystal of course!"

OK. Back to story reading!

Antianxiety drugs used before surgery

http://www.surgeryencyclopedia.com/A-Ce/Antianxiety-Drugs.html#b

By now Lucas knows the drill and gets very fussy in the OR waiting room.  He was given Versed today.  I need to find ways to not use extra drugs and have him prepared for OR.

Stayed in hospital last night

Since his urine didn't get clear by 6pm (he finally peed shortly after 3pm after we woke him up from the nap), and after the CPM chemo he would need 4 more hours of IV with plenty of fluid intake orally for 4 additional hours, the doctor gave us the option to either stay over night and finish 8 hours of fluid over night, or come back next day and do it during the day.  I thought it was a no-brainer -- since who knows how clear his urine would be the next day and spinal tap is scheduled for next day.   His urine finally got clear enough by 9pm and it was a peaceful night with lots of diaper change in the sleep.  The only part that didn't work out well, is that our original OR appointment was 11am.  We were hoping to be discharged first thing in the morning, then go to our outpatient OR appointment.  But it still didn't work out -- I'm suspecting for insurance reasons, that we are not technically outpatient today.  We were just told that we are now an add-on for inpatient OR -- the earliest is 2pm.   :(  That means no food for Lucas since last night till late in the afternoon...

I also need to learn to administer the ARAC IV at home.  So after the OR, we will come back to the "hotel room" and the nurse will watch me do it for today -- to make sure I feel comfortable doing that at home tomorrow and Thursday.

Will you just pee for us, baby?

We are waiting to get a urine sample to show that he has enough fluid so we can start chemo. With almost a whole bag of IV fluids and almost a whole bottle of water, he still hasn't wet his diaper ( we put cotton balls in the diaper to collect urine). Maybe he will pee for us when he wakes up.
His ANC is 924 this morning, compared to 200 last Monday. Platelets above 500 and hemoglobin 9.6.

Hospital visit tomorrow

We will resume our Monday hospital visits tomorrow morning.  First they will draw Lucas's blood to check counts.  If Lucas's ANC is over 750 (that's the harder one), and platelets counts over 75 (that's the easy one), he will start his Consolidation treatment.  I compiled the list of drugs Lucas will use at each stage of the treatment (AALL 1131) and linked it to the top right corner.    The Consolidation phase for High Risk ALL is much more intense than the version for Standard Risk ALL.  This phase lasts at least 8 weeks -- since treatment will be delayed if ANC and platelets don't meet the requirement.  This phase involves a total of 4 different IV (through the vein) chemo, 1 or 3 IT (through lumber puncture/spinal tap) chemo (depending on the randomized clinical trials), and 1 PO (taken orally, so tough on liver) chemo.   Two of the IV chemo and the PO chemo are new to Lucas.  Let's hope Lucas would tolerate those drugs okay.

Tomorrow, if ANC and platelets meet the requirement, we will spend a whole day, since one of the IV chemo is so tough on bladder that he needs to have a lot of fluid flushing through his system.  So we have been trying to let him drink more tonight.  He will then receive 8 hours of fluid tomorrow before the actual chemo.   One of the IV chemo drugs also require 4 days of consecutive use -- so we need to decide whether we will administer it at home or go to clinic every day for it.

The hard thing is that Lucas is pretty much back to his healthy state right now -- going up and down stairs sometimes on his own, running after his brother, etc.  We will surely miss that for a while as the multiple chemo will make he feel pretty sick for the coming weeks.