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+.

Night sweat and a common cold

Looking back, there are a couple of early signs for Lucas.   In May 2012, I took Lucas to the pediatrician office, requesting a blood drawn to rule out leukemia -- because he had frequent nosebleeds and our friend Kelly's daughter was diagnosed with leukemia in April.  The CBC looked great back then.  By the end of summer, the nose-bleeding became even more prominent and we got him cauterized at an ENT.  Starting September 2012, Lucas would wake up more at night, and I noticed heavy night sweats happening often.  That's also the time when he first started daycare, so we thought the night time wake up (usually 3am-4am) was a consequence of major lifestyle change.  I did still worry about night sweat.  Looking back, it's a early sign.

cancer – night sweats can be an early symptom of certain cancers like lymphoma orleukaemia, although this is unusual and cancer would cause other symptoms too, such as unexplained weight loss
-- from NHS UK

The night sweat didn't completely go away after the treatment started and Lucas came to remission.  Every time Lucas is drenched in sleep, I stay awake worrying.  Finally a parents on ALL board mentioned night sweat might be a side effect of steroid.   I looked it up -- it is indeed a possible side effect of Prednisone.  Lucas started this steroid pulse Tuesday night, he started to have night sweat on Thursday.   I felt somewhat relieved, though I will keep monitoring the night sweat issue.  According to TCM, night sweat is a sign of deficiency in Yin (as in Yin-Yang), which can be a result of a variety of disorders.

Lucas started to have cold symptoms last Saturday.  Running nose, congestion.  By Thursday he started coughing a little.  I had terrible sore throat Monday evening and coughing started Thursday also.  His congestion and coughing is very hard to notice today so hopefully that is the end of this cold.  He only went to school on Wednesday last week.

His ANC continued to look good on Tuesday and we increased PO MTX to 3.5 pills (about 75%), while 6MP stays the same.  With this cold, we would expect a drop in ANC when the cold ends (bone marrow would try to produce more WBC to fight infection, while chemo is trying to suppress it, so the bone marrow would decide not to produce as much).  We have a standing CBC order which means we can go to clinic to get finger poke whenever.  We will go on a weekly basis every Tuesday morning (now think about it, I will call to check if the close-to-home Children's Hospital open during evening and we could just go Monday evening).

Lucas went to a friend's house for a big gathering tonight for the first time after his diagnosis.  He woke up from his nap at 1:45pm and immediately asked if it's time to go.  He had to wait till 5:15 when I finally told him that we were ready to go.  He didn't want to come back home once he got there.  He ate a ton -- he was the first one to start eating and last one to finish.  He fell asleep on the trip back home. I had to wake him up for 6MP.  When I did, he didn't open his eyes, but opened his mouth instead.  I put the half-pill in, give him his straw cup.  One small sip of water did the job.  He is such a good boy when it comes to taking medicine.  So good that my heart aches every single time!

Restart!

I never thought I would find such comfort and rejoice to be able to put chemo into my little guy's body again.  But yes I did!  After 25 days of chemo hold (18 days days of 6MP and 2 doses of oral MTX before the hold), Lucas finally recovered to ANC = 1015 and we restarted both MTX and 6MP at 50% dose last night.  Lucas was so active Monday evening during our neighborhood stroll.  He hadn't been able to walk a distance on his own ever since diagnosis.   Monday evening, he kept running and running for a rather long distance. His little face was red and pumped afterwards and he told me he was running a race and finished first place.   Yesterday morning when I took Lucas for his CBC, it was also the first time that we didn't push the stroller and he didn't ask me to hold him during our hospital visit.

We didn't get to see a nurse practitioner or doctor yesterday.  We came straight home after finger poke.  I have left messages for our doctor for the dose that I think is reasonable.  And since Lucas learned how to swallow pills during the 25 days of break (I started with toasted bagel pieces, then we practiced with Predinisone during the steroid pulse), I calculated the daily pill dose while I waited for the results.  I was glad to find the dose came really close to my calculation when we picked up medicine from pharmacy.  6MP is 1/2 pills (25mg) a day for 6 days a week -- that's 47% of the dose he was on before, but since he has gained some weight during the 25 days break, it's actually less than 47%, so very much in line with what I think the dose we should restart with.  MTX is 2.5 pills a week, which is a little over 50% of the dose he was on before.  I do not suspect MTX was the culprit of counts crash for Lucas.  So if Lucas's counts will be higher than 1500 consistently, I will suggest to raise MTX dose first.   My evidence is when Lucas was on HDMTX infusion and 1/3 of the 6MP dose compared to LTM dose, his counts was stable around 1500.   When Lucas was on AraC infusion and 80% of the 6MP dose compared to LTM dose, his counts crashed and he needed 4-5 of blood transfusion and weeks of neutropenic.  

Today is also going to be first day of school for Lucas.  I will take a 1.5 hour (it would have been an hour if the parking at work is more friendly!) lunch break MWF to pick up Alex from his day school, pick up Lucas from home, send them to the part-time school.   Alex would have to have lunch in the car and he is actually looking forward to that (we pack lunch for his school anyway).  Lucas finds comfort in knowing that Alex would be in the same classroom with him as he still doesn't speak English.  Alex is excited that he gets to go to two schools and have two batches of friends and he would be the oldest in Lucas's class and be a leader there.  Jianwei will need to pick them up at 2:45 MWF and work from home when they take a nap afterwards.  

Today is also going to be first evening at AWANA for Lucas.  I will stay in his room with him.  Alex surprised me by remembering his first verse after he had to miss a class because of strep throat and I was not able to find his book and teach him more.  I hope Lucas's counts will stay above 1000 (or at least 750) and he can join us with our busy life routines.

Still recovering

Today we insisted to have a CBC -- there's a kid on ALL list who was scheduled to be OT (off treatment) 9/16, who had been on chemo hold for 3 weeks because of low counts, and who was confirmed to have relapsed.  The desperation of that mother was felt by all parents on the ALL list.  We all live in the fear that the worse could happen, as if our initial diagnosis of a kid with leukemia was not dreadful enough.  Today is day 22 of chemo hold for Lucas -- we are getting rather anxious after we hear about that particular relapse story.

So we went today and I woke up in the middle of the night last night and couldn't fall back to sleep.  If one is afraid of something during the day, the night only makes it more intense.  The nurse practitioner convinced us to go straight home after the finger poke as she believed that this whole CBC was unnecessary and said they would call us with results.  The finger poke was 9:30am.  I called 11:30am, then 1pm, to leave a message to ask for counts.  I finally got a call close to 2 and everything was looking good.  Hgb 11.8, platelets 147, and ANC 435.  Not high enough to restart chemo today, but the numbers are improving and it looks really promising for next Tuesday (that's the day the nurse practitioner scheduled us to come in anyway).  

Lucas will still be home-bound and miss all the fun for the weekend.  Alex will go swimming with dad tomorrow morning, followed by lunch with his two best friends before they go to the family fun event at our church.  Sunday we will have our routine Sunday school -- morning at church and afternoon at Chinese school.  Alex has been more aggressive after he restarted preK and he hit Lucas again tonight. So I had to take away his privilege.  I gave him choice -- there are three fun things I planned for him this weekend (1) lunch and play date with his friends (2) sleep in the same bed with mommy and Lucas Saturday night, and (3) a trip to the fancy bakery for a treat with mommy after Sunday school.  I would have chosen to forfeit (2) if I were him, but he chose to let go of (3) and said he could do with one less serving of junk food.  I'm afraid that I instilled healthy eating to an extreme with Alex.  He refuses treats very readily now.  I think it's part of his personality though, because the same teaching doesn't show any effect on Lucas.

Here are some pictures my cousin took when he visited us around the time Lucas started his LTM.  Lucas has since learned how to swallow a pill and he does that so quickly with very little water.   Yippee -- no more pills to crush and less worry about liquid form of oral MTX causing sores on the lips and inside his mouth!

Recovering

Lucas hasn't needed blood or platelets since last Tuesday.  But his counts are still too low to restart the major chemo medicine.  No time to write a blog entry, but here is the question I posted on the ALL board.

Lucas started LTM (COG 1131) on August 5^th.  He was on the typical chemo drugs for 18 days before he got on chemo hold because of low counts.   He has got 3 blood transfusions and 3 platelets transfusions during the hold.  Today is day 19 of chemo hold and his numbers are finally recovering with no need for transfusions.  Our doctor thinks it’s likely that we can resume chemo next Tuesday.  I have two questions.  (1) should we try to push for an earlier day for CBC and possibly restart the chemo sooner than next Tuesday(today ANC 175 and platelets 53)?  The doctor thinks coming to clinic often is frustrating, but we actually would feel more comfortable to shorten the hold.  (2) the doctor has decided to start Lucas with a lower dose.  I know it’s against the protocol since this is his first crash.  But we had second opinion and discussed this – let him stay on a lower dose is better than on and off.  We also have data showing his possible high sensitivity to 6MP during consolidation and DI with 4-6 transfusions needed each of the three times he was on 6MP/6TG combined with AraC; tested normal for TPTM.  We haven’t discussed the actual dose yet, but by looking at the data, I feel like 50% would be a good starting point -- 18 days of 6mp needs potentially 25 days of hold, so half would be more than enough.  The doctor did use the term "sprinkle" when we start chemo again but do they normally restart with even less than 50% at first adjustment?

I know this is probably a question for the doctors.  But I always feel that I need to be an active part in such decisions since I know my child the best and i study his numbers very closely(sorry I'm a statistician by training).  Anybody could share their experience in chemo hold in LTM due to low blood counts?  (1) the duration of the hold (2) the dose they try after the hold (for 6MP and oral MTX) and how the doses get adjusted going forward.    Thanks!

In the table below, I assume his hgb increases by 2 and platelets increase by 26 with 1 unit of transfusion (some times he gets 1.5 units of blood).

Date	Weekday	Meds	6MP (days of hold)	Bactrim/Pentamidine	Transfusion	hgb	hgb+	Platelets	platelets+	WBC	Segs	Band	ANC
5-Aug	Monday	Vincristine, started steroid pulse	100%			9.3		243		3	42	17	1770
6-Aug		IT MTX	100%
7-Aug			100%
8-Aug			100%
9-Aug			100%
10-Aug		finished steroid pulse	100%	Bactrim
11-Aug			100%	Bactrim
12-Aug			100%
13-Aug		oral MTX	100%
14-Aug			100%
15-Aug			100%
16-Aug	Friday		100%		blood	6.4	9.4	140		2.9	52	30	2378
17-Aug			100%	Bactrim
18-Aug			100%	Bactrim
19-Aug			100%
20-Aug		oral MTX	100%
21-Aug			100%
22-Aug			100%
23-Aug	Friday		1			9.4		24	50	2.4	71	5	1824
24-Aug			2	Bactrim
25-Aug			3	Bactrim
26-Aug	Monday		4		platelets	8.2		8	34	1.3	54	4	754
27-Aug			5
28-Aug	Wednesday		6		blood	7.3	9.3	34		1.3	28	2	390
29-Aug			7
30-Aug	Friday		8		platelets	9.7		20	46	1.6	20	0	320
31-Aug			9	No bactrim
1-Sep			10	No bactrim
2-Sep			11
3-Sep	Tuesday	Vincristine	12		blood + platelets	8.1	11.1	33	59	1.8	5	2	126
4-Sep	Wednesday	IT MTX, started steroid pulse	13
5-Sep			14
6-Sep	Friday	Hgb recovered	15	IV Pentamidine		11.6		43		1.2	13	1	168
7-Sep			16
8-Sep			17
9-Sep		finished steroid pulse	18
10-Sep	Tuesday		19			11.6		54		2.5	7	0	175
11-Sep			20
12-Sep			21
13-Sep			22
14-Sep			23
15-Sep			24
16-Sep			25
17-Sep	Tuesday