Recent chemo hold and hospitalization

1/20 begin 3rd cycle, ANC 3040, same chemo dose (increasing in actual pills since Lucas has been growing and gaining weight)

2/4 I still like to take Lucas for CBC labs in-between visits.  Surprising ANC = 602,

2/9 recheck ANC = 1334

2/18 scheduled clinic visit with Vincristine, Pentamadine. ANC = 538.  Needs IVIG but had a reaction (severe chills).  Lucas was having a cold and the lungs didn't sound very clear.  Chest X-Ray shows no bacteria infection,  Lumbar puncture which was scheduled for the next got postponed for 2 weeks.

2/21 Another CBC lab shows ANC = 288, chemo hold since it's less than 500

2/25 Clinic visit. Lungs seem to be clearing up. ANC = 704.  Need 750 to restart chemo.

2/28 CBC lab.  ANC = 238.

2/28 Friday.  My parents were scheduled to leave for China very early next morning.  We had had a busy week getting the shopping, visiting USCIS, with increasing clinic/lab visit for Lucas.   I took Lucas for lab visit in the morning, took my mom to USCIS at lunch time to get a stamp in her passport since she has received the green card with correct gender.   Our babysitter Lori took boys to preschool then Jianwei picked them up in the afternoon -- it was their last day at that part time preschool.  I thought Lucas's ANC would be higher than 750 and I didn't hear back the result until 2pm.  Anyway, when I got home shortly after 5pm, Jianwei informed me that Lucas just woke up and feeling warm.  I took the temperature and it was 101.2.  It was really bad timing since my dad was busy preparing the last dinner before their departure.  But we cannot wait, off to ER we went.   Lucas started to have cold symptoms late Wednesday (he had almost a week free of cold symptoms).  Not being able to get the full dose of IVIG surely didn't help!

3/1 Saturday: fever with rising ANC.  It's hard during winter since Alex is not allowed in hospital (no siblings under age 12 can visit during cold/flu season) and the playroom hours are very limited during weekend.  We had to ask a nurse to look after Lucas when Jianwei and I switch shifts of staying home with Alex versus staying at hospital with Lucas.

3/2 Sunday: no fever with dropping ANC.

3/3 Monday: ANC 42.  Fever free for 24 hours.  Dr. Setty is the attending!  Dr. Setty let us go home with super low ANC before -- she understands that some parents can be trusted to take care of their kids at home.  If ANC is the only thing holding back the kids, she would let us go.  So this time she let us go once again.  

Life is surely more difficult without grandparents' help.  We are so thankful to have our wonderful babysitter Lori.  She took care of Alex during frontline treatment when we took him out of preschool for fear of him bring home viruses.  Alex absolutely loves her since she is always so patient and fun!  When we both took Alex to a friend's birthday party, other parents would think Lori is the mother and I am the nanny since Alex always runs to her instead of me!  I'm so thankful that Alex had her since frankly he was getting much needed attention from her during those difficult months.  She has been providing transportation to the boys for their part time preschool so Lucas got to her a little bit.  Today is the first day that Lucas spent time with Lori.  I'm so happy to see them bonding finally.  Alex is very jealous that Lucas gets to stay home with Lori.  I would be jealous also!  :)

Another CBC lab this Friday and hoping the results will be good.  Chemo can resume and Lucas can start full time preschool -- which he officially started 3/3 but hasn't been able to go because of low counts.

The hardest part is that both Jianwei and I have the same cold (Coronavirus).  It's pretty rough with more symptoms than what I normally experience with cold.  But we couldn't rest since we need to save our precious out-of-office time to take care of Lucas.  I wish I could sleep in all day as I felt rather congested and dizzy, but I didn't have the luxury.   I think that is the hardest part of taking care of a sick kid -- you have to take care of them even when you are sick yourself.   Luckily we are in good health for the most part and hopefully we will get over this cold virus soon.   And hopefully I didn't pass it on to any of my coworkers. 

I used to *despise* coworkers who came to work when they were obviously sick.   "Can't you work from home instead?"  Now I know that some of us just can't.  Because our sick kids who have too weak an immune system to leave home are occupying our home.  I cannot work from home since they are too young to leave me alone.  Jianwei can since kids tend to leave him alone regardless. :P  I couldn't afford taking more time off since I have work to finish and I want to save my time off for future hospitalization and clinic visits.  I know every time I get a cold, I will have lingering cough for a while so a day or two wouldn't cure me.  I thought about going to Panera Bread to work to infect the strangers instead of my lovely coworkers.    Hey, I feel like I need to sing the Despicable Me song!  Anyway, I *despise* me!  Hoping none of them get sick!

This is what Lucas does when he is on steroid

Sleep and eat all day long.  :). 

Crapversary!

We first heard the term "crapversary" from ALL parents list.  How appropriate it is! 

One year ago today at this moment, we just received the dreadful call from the pediatrician-- who we saw three hours ago and thought everything looked good with Lucas, the fatigue and paleness was attributed to a lingering cold.  The image of the moment when I received the call and how I walked outside to the driveway to let Jianwei hear it with his own ears is going to be something that Jianwei and I will remember very vividly for the rest of our lives.

Today, strangers could not have guessed that Lucas is in treatment for leukemia.  He is doing well and we are immensely grateful.  His last CBC numbers as of the past Tuesday was: hgB 13, platelets 242 WBC 3.1 ANC 1600.  He is still on 40% of the 6MP dose and increased to 70% of the oral MTX dose.  He has got IVIG for the second time 2 weeks ago as his IgG level rose from 220 to 360 -- but still below the 560 threshold.  We have changed weekly finger poke to every 10 days, and most recently to every two weeks.  He hasn't missed a school day for almost 2 months!  We signed him up for full-time preschool starting March.  His new teacher is a young American born Chinese lady who can speak some Mandarin.  Hopefully that will help him to catch up with age-appropriate development.  He hasn't grown a whole lot since September -- still just above 92cm, which is below 5th percentile for his age.   His appetite is unpredictable but usually okay.  He has gained weight -- mostly because how diligently my dad has been cooking.

I very much appreciate how my work environment continued to be friendly as well as interesting.  My time at work is usually very busy and somewhat demanding, but I manage to not to work over 40 hours a week.  It's rare to have a workplace that offers real opportunity in career development while maintaining work-life balance from top-down.  For that, I feel immensely grateful as well.

Every evening I enter our house through garage, I can smell the delicious meal that my dad is preparing.  I'm so blessed to have my parents here to help out!  I do plan to give my parents a break in the spring -- concurrent with Lucas starting full-time preschool.  Hopefully Lucas will stay healthy and we will be able to handle it (it will be the first time we do not have help from grandparents ever since Lucas was born).

Lucas and Alex have played a lot more and a lot better just over the past month.  There are still places that I go with Alex alone without Lucas.  Alex and I went with his friends to Zoo for the first time in the past year in early November (it's not safe to Lucas to be close to animals).  I will take Alex to see Nutcrackers tomorrow.  We did take both kids to Jianwei's workplace holiday party on Wednesday.  Very few people take kids that young to workplace holiday parties and the coworkers all commented on how well-behaved Lucas and Alex were.  I guess they are pretty good boys after all.  This is the third consecutive year that we take the boys to that holiday party (that might be the only event we are doing so consistently).  We were quite brave to take them there when they were 3 and 1.5 two years ago.  We indeed enjoy going to places with kids.  I can't wait until they get bigger and we get to travel to many different places.

I think the readers all agree that no news from me is good news.  If I don't write an entry before Christmas -- may you have a wonderful holiday and best wishes for you and your family in 2014.  Most importantly, stay healthy! 

IVIG

Lucas came home Saturday afternoon with ANC 360 -- low but stable.   I took him for finger poke CBC today and the oncology phone nurse told me his IGG results together with the CBC result.

ANC is 890 and we will restart chemo with oral MTX 2pills/week on Tuesdays, and 6MP 1/4 pill/day, 6 days a week.  So essentially 45% on MTX, and 25% 6MP.

The bigger question is for IVIG.  His IgG level is 221.

The concept of low ANC is neutropenia, which is different from low immunoglobulin G.

For low IgG, he can receive a blood product called IVIG to boost his IgG level, which in turn helps with his immune system.

I called our oncologist today and got some questions answered:

Q: How often do kids under chemotherapy need IVIG?
A: It depends.  For infant or Down Syndrome ALL patients, it's quite common for them to need IVIG.  For the rest, it's not very common.  Usually doctors don't test IgG level unless a patient gets sick often and needs to have chemo hold often.
My interpretation: I really pushed for the test.  I know I'm the kind of parent who does lots of reading and probably get too much information if there's such a thing.  A lot of ALL parents never heard of IgG or IVIG.  IVIG is expensive (about $10k per dose depending on the size of patients) and the doctors need to prove to insurance company that it's needed.  IVIG also has its risks (mostly allergic reaction).  Some people with low IgG do not get sick often.  Quoting a parents on ALL LIST: "Even if his IgG levels are low, unless he's getting sick from it, they aren't going to give him IVIG (a blood product) unless he really needs it.  IVIG comes with its own set of risks  and issues -- no blood product is risk free.  And it's not really the number of antibodies (IgG, etc.) in the body that's important, it's how well they function.  Someone can have very low IgG numbers and not get sick as they are functioning well, whereas someone else with higher IgG numbers can be very sickly because theirs don't function properly.  "

Q: How often is IVIG given and how long will the regimen last?
A: It's usually given every 4 weeks (schedule sync with Vincristine).  IgG level will be monitored and the schedule might become every 8 weeks.  For some kids, IVIG needs to be given a few months after the chemo ends.

Q: How soon will IVIG start to work?
A: Within a day that it's given, it will start to work to boost immunity.

Q: You suggested us to wait for two weeks to get IVIG together with our once-every-four-weeks Vincristine and Pentamidine.  I feel we should act now since we know he is low on IgG.  Do you feel the urgency?
A: Unless you absolutely feel that you can't wait for two weeks, I don't see the urgency.  His IgG is 221 so he has some immunity.
My own take: If he gets it on 10/29, he will be ready for the flu season.  We will be extra cautious until then.

Q: Will one develop dependency on IVIG?
A: Not likely.  Chemo is what's suppressing the IgG level.  As soon as the drug gets out of his system, his IgG level will improve.

ER with admission

Lucas is hospitalized again for febrile neutropenia -- no fever for 24 hours and waiting for ANC to stop dropping (2254 Monday pm, 520 Thursday pm, 370 Friday am).  Cold with cough for almost two weeks. Tested positive for rhinovirus (nose swab) and negative for pneumonia (chest x ray).  The whole family went to visit this evening.  Alex practiced his Chinese writing at the hospital while Lucas played with my pen pouch.  The nurse will get extra blood sample to test IgG level tomorrow am.  Overall Lucas has good spirits and appetite.  We hope for cough to go away and quick recovery for ANC.  Hemoglobin and platelets didn't drop so I felt this ANC drop has more to do with viral infection than from chemo.  6MP is on hold since Thursday evening and will wait until it recovers to 750+.