102F ER and will be admitted

He is actually in very good spirits. But a routine temperature check at home at 8:30 shows he has fever and we need to follow the ER if >= 100.4 rule for a kid with near zero ANC. Port accessed, blood drawn, antibiotics in, and will go to 12th floor as soon as they have a room ready for us.

Hopefully he will be stable and go home soon.

Day 17

We went to the hospital early in the morning.  Today is a chemo day (weekly for now).  The routine is first to check blood counts (CBC); after confirming hemoglobin is above 8 and platelets above 20, he will get his two chemo medicines through his port.  To access his port, a pretty big needle(so big that Jianwei always looks away) is inserted through his skin to his port at his chest area.  To ease the pain (the pain is actually minimum since only the top layer of skin is there to be poked) and nervousness, a topical numbing cream is applied 30 minutes beforehand, and that can be done at home by parents to save the wait time at the clinic.

Lucas's hemoglobin is 9.1 and platelets 29.  So he got his chemo and came home after 5 hours in the clinic -- right, even an un-complicated no-blood-transfusion-involved chemo takes 5 hours.   Everybody was doing their job efficiently at the clinic, but there are simply more patients than medical staff.

I asked the nurse why his platelets kept dropping more so than his hemoglobin.  The answer is that platelets is more sensitive to chemo than the red blood cells.  So it's almost certain that Lucas needs a platelet transfusion before next chemo on next Monday.  We are scheduled to go to the clinic again this Friday to get CBC and most likely get the transfusion to stay safe and to get ready for next Monday.

Lucas did cry when doctors and nurses "messed" with him, but he was pleasant otherwise at the clinic.   He was very attentive while we read him stories, then he watched daddy coloring and played with some toys,  then watched some PBS cartoons on TV before we let him play coloring on iPad.  There is this lady named Cindy from "Child Life" that goes around and her job is to distract kids while their ports are being accessed.  I cried watching how dedicated she was with Lucas.   It's such a big relief since we tired parents are actually not very good at distracting kids at the clinic.  Both Jianwei and I went this time, but think how much help it would be if only one parent is with the kid.  She was so cheerful that we really hope to see her every time we go there.

Lucas came home and ate a big meal (well, he hasn't had one good BM yet, but diarrhea did subdue. So we still have him on restricted diet).  He is still napping now and Alex just got up from his 4-hour nap.  Alex went to a friend's house yesterday afternoon and skipped yesterday's nap.   We had planned to have Alex back before dinner but he invited himself to dinner at the friend's house.  :)  He didn't want to come back after dinner either!  I asked him why he didn't want to come back home after the friend finally managed to drop him off.   He said he forgot about mommy while he was playing with his friend!!!  I felt disappointed... but I guess I always tried to stay at my friends' house as long as possible when I was little and my dad would come to look for me with disappointment on his face (but I was in grade school then and I had homework to do).  I really need to find ways to stay in Alex's life so he won't forget about me when he is having fun!  It's a little tough to let Alex feel fun at our house right now, but we will try.

We continue to receive gifts and help from our dear friends and neighbors.  We got the cutest card from our neighbor Chris and Chuck -- Thank you!  And big thanks to the teen boys who have been helping us clear the snow for us!  I'm having a good stock of unopened toys in the basement now as I finally convinced Alex that we will slow down the pace of opening new toys.  And to those of you who have been very creative in giving us money that we can't reject, we owe you a big one now!  But seriously, your good wish and encouragement is all we need.   Leave comments here or send us emails.   Physical cards are always welcome as Lucas can collect them as the time goes.  Thank you so much for keeping us in your thoughts and reaching out to staying in our lives!  We will remember your kindness and teach it to our boys so they will grow up to be kind people like all of you.

And to myself -- be more patient with Alex... he is a chatter box but he means no harm... he is only 4 and he is already doing exceptionally well with the situation...

Still sleepy, and diarrhea

The strong medicine is taking a toll on little Lucas's digestion system. His stools were soft ever since his stay in the hospital. But at least it was only once a day and not running. We will put him on BRAT diet until the condition improves.

He is such an angel that he never whines or fusses. When he doesn't feel good, he just quietly lie there with a frown on his face. He still sleeps a lot. I hope his body is recovering from the long and restful naps.

The painter/mailman

Lucas was taking a morning nap and Alex was waiting outside. Look what he has prepared for us.

中医论白血病

原文地址：白血病的病因分析（倪海厦）作者：医道行者
    血癌的成因西医至今未明，只知白血球不断升高，红血球不断的下降，到底是何因
素令其失去平衡，如果无法确切的知道，则毫无预防之方法。中医检察此类病人时会查
到真寒假热厥四逆之症 .
    我们可以说中医的阳，有部份是白血球，阴，有部份是红血球，阳过亢，阴必退，
这是不易之理，阳就是营养产生的动力，阴就是营养，是故一定的营养必自然有一定的
动力存在，但从营养化成动力，必然有一定的过程。就如我们放一锅子在火上，锅中有
油，如此可以煮食，但如无此锅，直接把油倒入火中，结果如何，大家都知道。而人体
的锅就是小肠，人体火的源头来自双肾中间的命门位，这是人的生命中枢，有了火与锅
，脾脏分泌的津液就如油一样，三者合而为一，就产生强大的消化力，食物一经过消化
以後，高浓度的营养被吸收出来，全部入脾，此时精纯无渣的营养分五色，青丶赤丶黄
丶白丶黑，脾脏的功能就在支配此不同色的营养，使红色入心丶青色入肝，白色入肺，
黑色入肾，黄色则留在脾脏，此营养的输送就靠血脉与淋巴及内分泌系统，各色营养储
存在各脏之内，存而不泻，在人体须要的时候就释放出 [阳] 即动力，来供应全身，脾
供应肌肉能源，心供应血脉循环，肝供应全身之筋，肺供养全身皮毛，肾供应骨头的能
源。而自内脏而出的能源，必须先进入脊髓与人的精液混合，然後再布达全身上下，能
量释出後必产生水，一部份的水会流出体外，以利协调体内过高的温度，其他的水则会
滋润全身上下，保护人体体内的营养，不致因外在严峻的气候而丧失。因此阴与阳是互
相制衡的，阳无阴的支援则无法固表，阴无阳的卫外也无法久留体内。如果此一均衡状
态，长久不变就是正常人，而正常健康之人，在此均衡状态失去平衡时，都是有自愈能
力的，例如有受伤发炎，或体内发炎，白血球即阳都会升高，等到炎症复原以後，自然
又会回到均衡状态。
    由以上可知，如高浓度的营养不直接进入内脏，而有外溢的现象时，会出现两种情
形，一种是内脏病变，一种就是血癌，例如有肝病的人，到後来面色发青，这就是肝中
屯积了肿瘤或坏死的细胞，导致青色高纯度的营养无入肝，而上浮到脸上，中医就可依
此颜色来做诊断，而知病在那一脏，不须任何仪器的协助，就可以开始治疗了。有时内
脏是正常的，但人体受到一些外来的因素，如辐射，化学药品的污染环境，人们滥用抗
生素，类固醇等，影响到此一系统的运作，这一系统本是自动化的，例如，一些咳嗽，
中耳炎，肠胃炎等，本来人体就有自愈的能力，但一般的医师及病人为求速愈，就大量
的使用抗生素来消灭炎症，在人体本身制造白血球协助消炎的时间中，突然大量的抗生
素进来，它不但无法清除炎症，反而破坏了白血球的制造，於是体内自然就更大量的制
造出白血球来对抗，运气好的，或服用剂量不多的，自己以为病好了是因为抗生素，於
是感激不已，奉抗生素如神明，运气不好的又迷信抗生素的，不断的服用抗生素，终於
导致体内防卫系统失去平衡，人体误解以为炎症过强，乃至白血球丧失，於是就不断的
制造大量的白血球，目的是想协助身体回复健康，但却被一些医师误判并解读为血癌，
此时不但想去除炎症，又想去杀死过多的白血球，如此恶性循环下来，就导致人们死於
此症了.
    致於过度暴露辐射线及化学污染环境下的人，易生血癌，就是因为它们阻止了部份
高浓度的营养进入内脏，转而直接进入脊髓，於是刺激了人体阳的系统，就开始不正常
的制造白血球。因此千万不要随意暴露在辐射线下，以免产生後遗症，这就是为什麽照
X光片时，照像的人必须躲在铅墙後方的原因，中医是完全不须要用放射线的，所有的
中医师可以由外在的症状而确知内脏发生的病变，从而立刻下手治疗，例如查出病变部
位在脾脏，造成该入脾的营养无法进入，反逆入脊髓，就由脾脏下手，馀类推。又有女
子因经血逆流而入脊髓，造成西医所谓的血癌。
    此一病因由以上探讨，我们可知是阳过亢的现象，阳为热，故病人必定全身燥热不
已，并且口中津液枯竭极度口渴，也由於过热，导致血管壁的水份丧失，而极易造成皮
下出血，病人不须运动就自体产生极大的热量，这种不正常的假热也会破坏阴 [营养] 
的储存，结果就是贫血，如果遇到贫血，就输送红血球给病人，只导致过多的红血球尸
体屯积肝脏内，不但於事无补，反而加速病人的死亡，到时连中医都束手无策，这是前
医之过也。
    一旦得到此病时，不用慌张，也不可乱用化疗，随意输血，找一名优良的中医师或
自我诊断即可知晓，只要耐心调养并有好的中医协助，找到懂得使用经方的中医来治此
病 , 必然有机会治好的。
    由於我们知道是因本应入脏的营养，逆流出来而发生的病变，因此设计了令五脏吸
收营养的能量加大，利用活血化瘀的药物，来清除体内的阻碍，并促使小肠的营养完全
入脾，加强脾脏的功能，使高浓度的营养能先完全进入内脏，再由内脏输送到脊髓，使
阳的功能正常，不至於太过，同时要加入一些寒凉的药物，以预防贫血的发生，因此只
要有异常的燥热丶口乾丶倦怠丶无力丶体重减轻丶无胃口，专业人士请查第六椎第七椎
有压痛，或女人逢月经时大量经血外出不止时，都是可服用的时机，严重病患请找中医
师诊治，必须要有信心丶耐心，否则必然前功尽弃。

倪海厦的网站做的太乱了。谁有空帮我搜搜他有没有看过小儿急性白血病的例子？

他去世后，好像汉唐也没什么厉害的医生？

http://www.hantang.com/chinese/ch_Articles/Ch_index.html

Day 13

Alex went with us to the hospital today, since it's a light day with only a finger prick to get blood counts. Lucas fussed not because he was physically hurt by the finger prick, but because of the fact that he was in hospital seeing the same doctors that "messed with" him. He must have thought that he would never needed to come back. Nurses assured us that kids would get used to it and eventually establish a positive bond with the medical team.

Lucas's blood count was pretty good - hemoglobin 10.4 and platelets 79. ANC = 341, which puts him still in the "significantly increases the risk of infection" region. But at least he doesn't need blood transfusion as his hemoglobin stays above 8 and platelets above 20.

We also got some good news from his initial bone marrow aspiration. The DNA index is 1.23, which is higher than the 1.16 magic number. Meaning "Aneuploid Blast Population (DNA Index=1.23) Studies show ALL with DI >=1.16 correlate with better response to treatment)". It is not significant enough to change his risk category, but it is still pleasant news. The Cytogenetics result is not out yet.

Alex had a small but effective talk with the psychologist, who conveys the message that a 4 year old can understand.
(1) Lucas is sick.  It won't be passed from person to person like cold or stomach bug. (Alex added: "Yes, it's not caused by virus."  The psychologist smiled and applauded. )
(2) Lucas is sick in the blood.  The medicines used to fix Lucas is strong.  It's so strong that it might make Lucas lose hair or throw up.  But this cannot be passed from person to person because it's caused by the strong medicine that will fix Lucas.
(3) Lucas needs to go to hospital often for treatments.  When Mommy and Daddy are taking care of Lucas and not there for Alex, there's somebody who will take care of Alex.  Sometimes it's Grandma, sometimes it's friends of Mommy and Daddy
(4) Alex gets mad when Mommy and Daddy keep focusing more on Lucas.  It's okay to be mad.  Alex will use words instead of stumping or hitting to let Mommy and Daddy know that he is mad.   Mommy and Daddy will listen and try their best to make him feel better.

And more questions answered:

(1) Shivering could be caused by low blood sugar, a side effect from the steroids.
(2) Should encourage him to drink Pedisure, chocolate/strawberry milk, juice... basically anything with added sugar to keep him blood sugar level steady.
(3) No tapering off steroid is necessary.  Stop Decadron after tomorrow (day 14).  Stop Zantac after 2 additional days.

The next appointment is next Monday for IV chemo.

Who sent this cute stuffed toy?  Lucas likes it very very much.  Thanks a lot!

Day 12

Lucas is pleasant for the most part today.  He is tired often and needs a lot of sleep.  He eats 5 meals today, mostly still white rice, shell pasta with chicken broth, and boiled eggs.  He finished 6 egg whites and at least 3 egg yolks today.  We couldn't get him to eat any vegetables or fruits.  Tomorrow we will ask the doctors if we should give him Pedisure or maybe the toddler formula.  He has chills from time to time -- when he complains of cold and shivers uncontrollably.  No fever, having my fingers crossed. The chills could be caused by low white blood count.  It's very considerate for the doctors to schedule the appointment tomorrow -- it is true that after we get home, we now have more questions.

Jianwei went to work this morning and has been working from home even when we were in the hospital.  Alex and I went out for 2.5 hours this afternoon to run some errands and do some grocery shopping.  It was refreshing to walk in fresh snow.  We got Lucas a Shark anatomy book from Costco -- the one that Lucas always wanted but we didn't get it since it looked so fragile.  I am looking into getting him some other toys that he has always wanted.  I do realize that I'm spoiling Lucas in many ways now.  But he is such a good boy that he hasn't taken advantage of this situation by any means.  He only cries when he is hungry or when he is given a shower, gets changed for diaper, or has is teeth flossed and brushed.  I can completely find reasons for all those moments.  I can't stand any of those things when I feel sick.

Tomorrow we might get the bone marrow Cytogenetics result -- which could potentially change the risk factors.  I have so much anxiety every time waiting for such results.  And it's hard to imagine that this is the only beginning.   I feel that if I can weather through this, I can handle anything.  Maybe in five years I will run for senator, or open my own business.  Any other suggestions?  :)

Home sweet home

Lucas is happy and mobil after a restful night of sleep.   He still likes rice, egg, and plain shell pasta as he did before, and not much else.  We will use broth from chicken, meat, and fish to cook rice and pasta in the future and will try to get him eat more variety of food.

We opened all the boxes, but not all the wrapped gifts.  We allowed them to each choose two toys to un-package today.  Alex chose a Hot-wheel play-set and Optimus Prime Transformer.  Lucas chose a Finding Nemo play-set and a play-doh set (who sent it?).  Alex asked me why they got so many toys this year.  I told him that many friends of Mommy and Daddy love Alex since he was so well-behaved during the last 11 days and they love Lucas since Lucas has been so brave since he was diagnosed.  And I told them that we would need to spend more time inside the house.  Alex asked why they are all from friends of Mommy and Daddy instead of friends of his.  :)  He warned me over the phone that he would have many questions to me.  Hhe had been talking nonstop ever since I stepped in the door.  It was quite an adjustment for me.  Lucas is mostly quiet and I got used to it.  Now Alex keeps talking and asking questions.  He surely learned a lot more phrases in the past 11 days.

The medicine feeding got a lot more under control once we get home.  I combine Zantac and crushed Decadron into one 2ml syringe.  My stone grinder is so much more efficient than the pill crusher from hospital.   Our friend Yangyang sent us snacks from LA, which I use to feed in-between each sips of medicine (checked with pharmacist, they can be taken with food).  Now we don't have screams or tears during medicine feeding!

We are still in the process of move back to master bedroom which used to belong to grandma.  Lucas is very happy to find that he could co-sleep with Mommy even after he leaves the hospital.  If his hands and feet don't feel so cold and he doesn't complain about coldness whenever we change his diapers, he is almost back to normal.

The next doctor appointment is changed to 12/27 9:15.  Just a finger prick for blood counts and a chat with the doctor and nurse practitioner.

It's so much more convenient to get pictures and videos from from iphone than from DSLR.  We are so spoiled these days with technology.

We are home

And thank you for all the gifts! We will have a lot of fun opening them tomorrow morning! :)

Waiting to be discharged

And way beyond his nap time so he fell asleep. :)

Possibly allergic to peanut butter!

He was not allergic to that before. But with so much strong drugs, his body is different and we need to be more careful!

In operation room for lumbar puncture

The operation was scheduled 12:30. Lucas cried for food for the whole morning.

We will come back as outpatient to have blood counts check up 12/26.

Platelets transfusion

Platelets transfusion started 4am to get Lucas ready for operation room. Shortly after the transfusion started, he became agitated. He complained discomfort and moved his arms furiously. We turned on the lights to check on his color and possible rashes, none. Then he cried hard and started coughing, so much so that his heart beat was over 160 and the monitor kept beeping. We turned on the TV and even that didn't calm him down. We called the nurse and he stopped the transfusion. Probably coincidentally Lucas calmed down. But the medical staff can never be too careful. So the nurse called the doctor. Doctor came and said she did hear some wheezing sound, at the same time the oxygen level was a little low. So they put some Benadryl through IV and restarted platelets transfusion at half the rate it was on before. So far so good. Lucas has been sound asleep again.

A video from November

Brothers help each other.  Sorry it was shot sideways...  

I hope both my boys will be happy and healthy forever!

Day 9

A quiet day but didn't get him to walk.  Hopefully he will walk more once he gets home tomorrow.

And here is the drama that we need to go through twice a day.  Lucas knows he needs to take his meds after breakfast and after dinner.  But knowing it and accepting it don't make the meds taste any better.  The nurses all tell us that Decadron tastes awful.  Anyway, we get through it.  We would try pill dip into honey and swallow when we get home.

Can't sleep

Lucas's heart rate drops a lot during his sleep.  The nurse last night changed the lower bound to 57 so the machine won't keep beeping.  The nurse tonight changed it to 50.  Doctor said it's a side effect of a drug we are on.  Still, I worry that his heart rate will keep dropping.  DAUNOrubicin has potential side effects on heart function, especially on young kids.  I really hope Lucas will come out of this to be cancer-free all his life and no lifelong side effects.  

Day 8

Why Lucas didn't want to walk

The nurse just told me that Lucas's hemoglobin was low--7.5, so they will start blood transfusion (or maybe just RBC transfusion?) over night.

Hard to imagine that his hemoglobin was 3.9 when he was admitted but he was still relatively active. Actually he walked some yesterday evening. He even insisted carrying a kiddo chair all by himself so he could sit with daddy to hear the big red dog Clifford story.

He would need platelets transfusion before Monday spinal tap too. Usually if the blood test shows hemoglobin less than 8 or platelets less than 20, they would start transfusion. But if they need to go into operation room, they want to see platelets above 50 so they don't need to worry about bleeding problem. Lucas's latest platelets are in low 20's. Again, with the chemo, all the cells, good or bad, get eliminated. White blood cell, the infection fighting agent, is the part that cannot be increased with transfusion.

Lucas just murmured "play drum" in his sleep. He was talking about play piano, trumpet, drum and singing with me while we fell asleep last night. I would love him to learn to play drums when he grows up.

Second round of chemo

Lucas had the second round of vincristine and daunorubicin today. He was also taken off IV fluids so the nurse can monitor his vitals and get him ready to go home after two days. He has been complaining about tiredness and hasn't walked since yesterday. The doctors want us to encourage him take a walk every day.

New medicine today is an oral medication to decrease the chance of getting pneumonia again. Twice a day, every Saturday and Sunday. Still on Zantac and decadron and stool softeners.

Alex is at our dear friend Sijin's house for a first-time-ever sleep-over. He was very pleased to find out that we would go back home on Monday.

The view from hospital playroom and our room

This is new as of June 2012. It's amazing how dedicated and happy the nurses here are!

Even so, we hope we will never need to come back here again.

Get some encouragement from the hospital nurse

Today,our nurse was checking on Lucas's tube because it made beep sound. I worried that there may be some issue on his port needle, so I asked her to get another eye.

Our nurse called her coworker, and we had some chat with her coworker. Our nurse's coworker told us that there are two nurses who are working here at Children hospital right now were leukemia patients here when they were  children.

It made us feel hopeful, we are looking forward to the life after the long battle ( Lucas's treatment will take 3 years).

Day 7

Still a sleepy little guy.

Port needle change

Needle meeds to be changed every seven days. Got poked today. I guess it took the surgeon three times before getting it right when he installed the port last Friday. Today we added the fourth poke. When we go home, they will take the needle out and put a new one in every time we go get chemo. It's one kind of ordeal to make your little one to swallow all kinds of nasty medicine; it's a different kind of ordeal to see your innocent kid be poked in many different ways (port chest area, spine lower back area, and hip bone marrow area). It must be very hard for Lucas to understand why he has to go through all those unpleasant things. I hope he will remember none of that when he grows up.

Other leukemia fighters

Lucas is still asleep and he has good sleep here almost every night, knock on wood.  He has the tendency to sleep a lot even when he has a minor illness.  We worry a little bit about the amount of sleep he needs nowadays.  Hopefully it's just because he is a bit tired as his body is fighting the disease.

I added a section on our blog to present some other leukemia fighters. If you know of any and if they don't mind, please let us know. We would like to know their journeys.  It's both educating and comforting to read other parents' blogs so we don't feel too lonely with lucas.

We want to keep this blog here , so when Lucas and Alex grew up, they will understand what their family went through and appreciate all the help from their families,  and many "uncles and aunts".

-- by Jianwei using Xiaoyi's account

Lucas 的第一疗程资料计划和血液指标

有很多朋友联系我们问我们需要什么样的帮忙。我们需要的是大家对小宝的关心。

我最担心的是万一正常的疗法对他不适合，就会比较危险。他今天还是很累，不想走路。

我们的医生说一切都显示药物在发挥作用。我把小宝的疗程和今天的血液指标贴出来，我们不觉得这是个隐私，如果您有医学方面的知识， 看出任何不好的地方，和我们交流一下。

谢谢。

Day 6

Go home 12/24

If everything goes well, we will have another round of chemo drugs this Saturday. Then on Monday 12/24 we will have another spinal tab together with spinal chemo. Hopefully that will be done first thing in the morning and the blood counts would be good enough for Lucas to be dismissed from the hospital.

We will be getting weekly chemo treatments for the first month. Fingers crossed that the result would be optimal.

Movie time

Lucas agreed with Mommy that princess movies are the best! With Lightening McQueen, Finding Nemo, Mickey Mouse, and Dora the Explorer as other options, he picks Tangled almost every time! I will be able to recite the movie line by line pretty soon!

Waiting to meet with the nurse practitioner we are going to work with in outpatient clinic before the nap.

Stuffed nose，lethargy

Lucas poops every time he comes to the playroom! At least we don't worry about constipation, which is a common side effect of one of the three chemo drugs he receives.

Jianwei brought rice cooker from home, as well as soy sauce and eggs. He ate a little more since yesterday dinner.

He napped 4 hours yesterday, and then 11 hours at night.

Day 5

Quick update

The attending doctor thinks the blood pressure is a low normal and is in line with his initial numbers.  A low blood pressure together with an elevated heartbeat is concerning-but his heartbeat is not high at all.  In general, when Lucas sleeps, all his vitals are low -- oxygen, heartbeat, blood pressure, body temperature.  And since he hated wearing tubes for oxygen, we are using blowing tube to get his level to normal.  When the blowing tube is misplaced when he tosses and turns, his number would go under normal minimum and the monitor would make a sound and wake me up.  I would reposition the blowing tube.  Luckily I sleep whenever he sleeps (since he wouldn't go sleep without me), I manage to get enough sleep even with interruptions.  And thanks to iPhone, I can update blog right now lying next to him.

If he hadn't got pneumonia, he would be able to go home today and continue t be treated as an outpatient.  Now the doctor is trying to decide whether he would have his next spinal tab and chemo on Friday or later.  His day 1 is Saturday, not a weekday, so the lab and clinic have limited resources.

The numbers of his daily blood test shows the chemo is doing what it is supposed to do.  And his pneumonia symptoms have gotten better.  Hopefully we will be home for Christmas and can open many gifts from you together!  Lucas loves the card and balloons he got today from Kelly and XZ.  I will try to make sure he gets one new card every day until he fully recovers.

Low oxygen, low blood pressure

Oxygen level started to be low since yesterday lunch time.  He has been getting oxygen when he sleeps.  The reason for that is he cannot breathe as well with pneumonia.

Blood pressure starts to be low since the middle of last night.  80/40.  Haven't talked to a doctor about it but they increased IV fluid.

No new drugs for 3 days starting today.  Main goal is to recover from pneumonia and have the vitals be in the right range again.

Day 4

He felt a little better later on and played for almost one hour in the playroom, first at play kitchen, later at train table. He was upset that the eraser for whiteboard was missing. He loves to have daddy draw and he helps cleaning afterwards.

He is asking for 哆啦A梦 now. PPS is not working on iPad, but only on iPhone now. Anybody has the same issue? Already tried delete and reinstall and didn't fix that.

第四天- 谢谢大家的关心。

今天是Lucas 的第4天治疗，总的来说还是很好的。Lucas 是个只要妈妈的小孩， 他小的时候， 我就主要带大宝，晓仪是主要带小宝，现在很多事情晓仪比较累一点。我今天去下边买了一些Cafeteria 的东西，小宝的胃口中午就好一点。

Pegaspargase 是一个新药，总体来说他的反应还可以。我们稍微送了一口气。

小孩急性白血病的治疗非常固定，第一天医生就给我们复印了一张纸，说全美国都按这个方案治疗。如果Lucas 对一些药物反应不好的话，就比较麻烦。医生的水平经验就比较重要了。希望不要走打哪一部。我希望小宝是个简单的程序，不会去挑战医生的水平。

小宝的每个指标都显示药物在起作用，希望以后几天不会有反常。除了第一天有点吐，其他时候没有太多的抗药表现。

中午他睡觉的时候呼吸稍微有点弱，护士给他带了个氧气口，他就很不高兴。现在他的心中肯定是很多敌人。一开始我和他说我们在住旅馆，现在也没用了。

小宝一开始非常讨厌吃药，现在到时间会想着要求吃药，当然吃的时候还是很痛苦。

有时候我觉得挺悲伤，他其实知道吃药很痛苦，但是还是想早点来算了，等的过程更痛苦。这个漫长的过程对他的心理的影响比较久远，希望以后他不会记住太多。

杨颖阿姨每天都来带一下大宝，大宝的心情还是不错的。我妈妈不是很喜欢和人交流，他和我比较像，很少有新的朋友，大部分朋友都是交往很长的朋友。希望她自己会和他们打打电话。

曹红姐和我们介绍了国内看血液病的专家华医生，我们也打电话问了一下，他提的建议我们也和这里的医生交流。有那么多朋友帮忙，觉得很幸运。

还有很多朋友都送饭，帮忙我处理很多事情，我们都觉得很感激。有一些电话我们没有回。我们写在这里，大家对我们的情况都有了解。

我们的生活还是会进行下去，就是重点会有点改变。

Day 3

Cough, weak lower body, and another chemo

Cough isn't get any better.  Oxygen level on the border line.  No fever.  Tired and sleepy.  Doctor says another X-ray will be given if cough doesn't improve.

Doctor hasn't given a good explanation to the weakness in lower body yet as he was fine when his hemoglobin was even lower before admitted to hospital.

There's a chemo that's only given today (day 4) for the induction treatment (peg-asp).  Hopefully no bad reaction.   

A light day

Today we didn't have any new drugs. And no new diagnosis.  Lucas coughs pretty hard, but the doctors said it sounds pretty clear.  One doctor mentioned that if it's a viral pneumonia, the antibiotics wouldn't help and for a healthy person a viral pneumonia takes roughly one week to heal.  I surely hope The cough subdues sooner than that.  

Because of Steroids and constant IV needed with chemo (to help body get rid of killed cancer cells), Lucas started fluid retention, especially in his legs and feet.  His blood pressure was 88/55 roughly, now could be as high as 130/60.  But not anything alarming to doctors.

He is weak in the legs, most probably because leukemia itself rather than side effects of the 8 different drugs he is under.  We will keep a close eye on that.

My parents did video chat with Lucas this morning.  He was not in a good mood then.  Later on he was more calm and playful.

By now Lucas decided all the strangers walk in our room were coming to irritate him.  He told me that he wanted to leave this hotel and go to some other hotel.  He wants to go home badly and kept asking about it.  Jianwei brought more toys and books from home, together with his stroller.  

Day 2

Pneumonia

Coughed quite a bit starting last night.  No temperature but had X-ray done for cautionary measure. Since we did an X-ray at the time of admission Thursday night and it was clear, we caught it pretty early.  Zosyn will be started soon.  Treatment will continue as scheduled.

Side effects started but better than expected.  Moody and upset stomach.  Throwing up is daily routine now.  Lucas is very resistant in medication.  Hard to get it down and hard to keep it down as when he cries hard, he throws up. 

It's also hard to get him to eat anything other than white rice and pasta.

But he is such a sweet little boy that it's a complete joy looking after him.  

Help we need now

As blogspot is blocked in China, and I don't have energy to keep a Chinese blog.  Could somebody keep a Chinese blog for me on probably Sina?  I don't want to spend too much time explaining things to my folks in China but I think they deserve the access of first-hand information.  The Chinese blogs doesn't need to be as long and as comprehensive as my English version.  Google translate can do a good job most of the times, but I think human supervision is still needed.  Please let me know if you are willing to help.

How we are doing

Several of you have asked how I, Jianwei, Alex are coping with this and the arrangement for Alex.  I will update a little bit over this subject.

I, as you have felt through my writing, have been pretty calm.  I might not seem strong to you before, as I don't have strong personalities or aggressiveness.  I think in front of unexpected situations like this, my calmness and rationality helps.  I was very surprised at first but I acted quickly.  The first thing I did that night when the pediatrician asked us to go to ER soon, was to take off my contact lenses.  Then I packed my essentials quickly as I know Lucas would not let me leave hospital for an extended period of time and it would be hard to ask Jianwei to get certain things for me as he is not into girls things. :) I also packed Lucas's favorite blanket and Mickey.  I am the main person to communicate with doctors and nurses and I stay calm during our communication, making mental notes as we speak.   I have my cries a couple of times a day, especially when I see the out-pour of love and care from so many of our friends.  I use iphone to keep track of things that need to be done.  I know I need to plan many things in our life and I'm getting a good handle on that.   The first person outside of our family who heard about the news is Sijin, as I called him early Friday morning.  I asked him to help prepare documents to extend Jianwei's mother's visa and get a Chinese visa for Alex in case we decide to send Alex back to China with the grandma.

Jianwei's mom was going to go back to China 12/18, as she entered US on 6/19.  We just filed her visa extension, part of the supporting document is a letter from Nationwide Children's hospital, saying how important it is to have a family support for the treatment.  Having our fingers crossed that her visa extension will be approved.  We are thinking of letting Jianwei getting citizenship so his mom can stay with us for a prolonged time period.  Jianwei's mom is calm and resilient like me.  :)  And Lucas is very much attached to her.  Lucas kept asking for Nainai, wanting to go home and see Nainai.  Right now, Grandma is home with Alex, even though she very much wants to come and visit.  No children under age 14 is allowed as visitors to Nationwide Children's -- we probably wouldn't let Alex to come and visit if it's allowed.

Jianwei broke to tears as soon as he heard about it.  It reminded him of losing his father during college, which was surely a traumatic experience.  He has been crying more -- but I think letting emotions out is good.  I never try to hold back my tears either.  Jianwei is doing a good job paying attention to details such as physician names and drug names and doses.

Jianwei and I are eating and sleeping well.  Lucas can't finish most of the stuff we ordered from the dining service so I think as long as we are in the hospital, we have enough to eat.  Yanli sent some delicious food yesterday, which we are consuming at a slow pace.  My dear friend and coworker V sent some power juice made from organic raw vegetables and fruits Friday evening, together with some fruits and snacks (Lucas loves that box of crackers and that "cookie" really helped us to entice him with   oral medication).

We did a few things logistically.  We changed our medical plan for next year to a one with high premium and lower out-of-pocket cost.  We maxed out health FSA contribution.  We filed visa extension for grandma and applied for Chinese visa for Alex.  Monday I will call my company HR to ask to change dependent care FSA to 0 and max out health FSA to max.  Could somebody find out for me that is it the case that, for health FSA, each parent can contribute as much as 2500?

Lastly about Alex, he cried the night we left for ER, as Jianwei was crying and Alex had never seen daddy crying.  Alex was crying really hard, asking "Baba Mama promise me that you will bring Lucas back" and "I want to go with you".  I haven't had a chance to talk to him since but Jianwei goes home once a day.  Our friends Sijin and neighbor/friends/newly-established-family Doris, who Alex was very familiar with, are taking Alex with them during their weekend activities so Alex doesn't get bored.  Actually I do worry about grandma when Alex is not at home.   I hope she will stay strong and healthy, as she has been and will be such a tremendous help for us.  I feel very sorry for her that after a long time of continuous hard work, she has to endure this together with us and continue to help out.

About Alex's arrangement.  We are still debating whether we should send Alex back to China.  We are certain that we do not want Alex to go to daycare any more as we do not want to deal with germs at daycare.  We are afraid that Alex would get bored staying home most of the time with us and thinking he might benefit more if he goes back to China and attend preschool there.   That's the rational thinking of mine.  Emotionally I want Alex to stay with us.   Alex might not be intellectually advanced, but he is emotionally mature for his age.  And I will try my best not to ignore his needs -- and what he need most is love.

I tend to be impatient and snap on people, especially the ones closest to me, such as Jianwei.  :)  I will try to do less of that.

I might break the news to my parents today as they usually like to do video chat with the kids Sunday mornings.  I hope they can handle it well.  They don't seem to have the calm gene as I have.  Wonder where I got that gene from.  :P

Day 1

Port got fixed!

A few updates

First of all, the port the surgeons spent 1.5 hours on yesterday in OR is not working.  They suspect a blood clot in the device and has put a dose of TPA(?) to loosen it.  It doesn't seem to work though.  They will try a second dose of TPA.  If that doesn't work, they will give him a chest X-ray. Sometimes the tube has a little kink inside and could only work if the arm is raised, for example.  Let's hope Lucas doesn't need another port surgery.

The attending doctor talked to us about the first month of intensive treatment, which is called induction chemo.  Treating childhood leukemia is very much standardized in US. Same treatment will be given no matter where you live.   We will follow pre-B ALL high risk protocol.  If the result after the first month of treatment is not optimal, one would need to follow Pre-B ALL very high risk protocol.  

Today is Day 1. The chemo will start as soon as the port starts to work.  The induction chemo including drugs that will make his hair fall off.  14 days on steroid.  

Day 8 we we'll get another spinal tab.  The initial result as how effective the drugs are to Lucas will be known.  We will leave the hospital when his WBC is at a safer range, which is expected to be around day 8.

Day 29 will be another big day for us.  Another bone marrow biopsy and spinal tab needs to be done. The result of that will decide whether is high risk or very high risk. That's the weekend of 1/12.

List of drugs for induction:

Cytarabine

Vincristine

Daunorubicin

Dexamethasone

Pegaspargase

Methotrexate

There are also a drug to protect stomach from side effects of Dexamethasone, and a drug to counter effect the constipation effect of Vincristine.  There also an anti-nausea drug for another side effect.

Isn't that ironic? For someone like me who believes in alternative medicine and a complete minimalist when it comes to medicine, I will need to put so much drugs into my little boy.  One drug, some other drugs to help, even some others for side effects.

Back to where we started, hope the port will work soon!

Acceptance speech. :)

Even though I'm not an avid attendant to public religious activities, I am a true believer of higher beings, the divine.  Everything happens for a reason.  We might be too trivial to be able to understand the reason at the time of the incidence, and we might not even be able to comprehend within this lifetime, but there must be a reason.  If it's planned that I, together with my family, should experience something challenging and emotionally involving as this, I accept it.  I do not accept it as if I accept a challenge and ready to fight.  I accept it as if this experience will offer me an opportunity to live my life differently as I originally thought it would be.  I will embrace this opportunity and live my life positively, as I have always done before.

I'm so fortunate to have so many caring friends.  I read each and every emails, messages to my iPhone through different channels,  and comments left here.  Reading your kind and encouraging words is when I cannot control my tears.  I will not be able to spend as much time with you-my friends- in the near future.  Please keep us in mind and your encouraging words are always appreciated!

The operation last evening went smoothly.  Lucas went to OR 4:55. Bone marrow procedure and lumber puncture (spinal tap) done by Hematologist is finished around 5:30.  Installation of portacath done by general surgeon is finished around 6:50.  We were allowed to see Lucas in recovery room around 7:15.  Lucas's eye lids and skins around his eyes were a little bruised from the fact his platelets were low and he was blindfolded during the surgery.   The anesthesia did give Lucas side effects manifested as throwing up 5 times.  As he hadn't had food or water intake since Thursday dinner, he was throwing up stomach acid and that made him uncomfortable and fussy.  We didn't get back to our room until after 9pm.  Finally he settled down and went to sleep shortly after 10pm.

We had a very good night of sleep last night.   The nurse allowed me to sleep with Lucas in his bed as Lucas really wants me to.  Lucas is on IV for basic nutrition.  He hasn't complained about thirst or hunger.  I do worry that he will have poor appetite for a while and cooking for him will need patience and creativity.  Any advice or suggestion on that subject is highly appreciated!

Today the attending doctor will meet with both my husband and I to discuss the details of this type of leukemia Lucas has and the treatment plan for the first six month or so.  The spinal fluid result will be out by the the time we talk to her. Fingers crossed.  The treatment plan will be enhanced after the gene mapping results come back in 1 week.  The total treatment is at least 3.25 years (Lucas being a boy needs one extra year than girls to decrease cancer relapse in the productive organs).  The doctor joked that they would always be in our life from now on since Lucas would need annual check-up from Hematology and Oncology all his life.  Right.  Even after Lucas is considered "cured" from leukemia, he would live with a higher possibility to develop cancer (in many cases, hard to treat kinds) throughout his life.  It might be mind-boggling for most parents.  My super cute and 100% perfect Lucas is having an extraordinary life ahead of him.  I appreciate the opportunity to be his mother, to be able to see some extraordinary sceneries along the way.

preB ALL high risk

Initial lab work is in.  It's preB ALL from the bone marrow draw.   Since his initial WBC is 95,000, it's considered high risk and the drugs used tend to be a little more agressive.  But at least it's not AML or some other harder to treat ALL cases.

Lucas is in operation room now

He is expect to stay there for 2-3 hours. 3 procedures will be done (bone marrow draw and biopsy at hip bone, spinal fluid draw at lower back, and port installation. We are in the waiting room. After each procedure, the doctor will come to update us.

The test result for bone marrow will be out later today or early tomorrow.  From that we will know what kind of Leukemia it is and the risk category. Spinal fluid result will be out at latest Monday, that will tell us if the cancer cell is found in spinal fluid. First batch of chemo medicine is put into spinal fluid during this surgery regardless of the findings.

I really really really hope there will be good news that I can share with you tomorrow morning. The surgery goes as it's supposed to go.  And no cancer cells in spinal fluid. Please pray and bless! Thank you!

What life has prepared for me

Lucas is admitted to Children's for Leukemia.  Yes, I know it's hard to believe, but unfortunately it's true.  He had no alarming sign other than paleness and fatigue ever since the cold he got during Thanksgiving.  Dad thought I was a little over the board when I told him that I'm going to take him to the doctor.  I thought I was having him tested for anemia because of recent poor diet or a case of mono.  Had the doctor appointment at 4:45 and went to have blood drawn after dinner.  8:15 or so I got the dreadful call.  I had to let the Dad to hear from doctor himself as I know it's very hard for him to believe.  I didn't experience any denial or anger.  I do feel sad and I know I will feel sadder with all the ordeals Lucas is going to go through to get better.  His initial WBC is over 90,000 which put him into the high risk case.  We are yet to find out what kind of Leukemia it is.  We will find out more by Monday, if not earlier.  Friday he will be put under general anesthia to have three things done: bone marrow bioposy at the hip, lumbar something also know as spinal tap to draw spinal fluid, and a port put into his major blood vessel near the chest.

I know you still can't believe it.  Sorry I won't be able to talk to you.  Please leave comments here or send me emails.  We are standing tall.  I feel relatively calm and still smiling and joking as I always do.  There will be favors that I would need from you and I will ask when it's time.

Thanks for reading and please pray for us that Lucas will have a smooth treatment and fully recover.

I would entertain discussions and worries about how Kelly and I could both have kid with Leukemia, but this is not top priotity for me now.  Now I know I have a Leukemia kid and I need to be the strong loving mom and supporting wife.

I will try to get some sleep before the big day coming up for me.

幸福婚姻法则(ZZ)

温格·朱利是美国的一位婚姻问题专家，他写了一本书，叫《幸福婚姻法则》。为了提高该书的发行量，他决定聘请一位代表性人物，作为该书的代言人。



2006年情人节，有一对夫妇被美国有线电视网(CNN)隆重推出，他们是102岁的丈夫兰迪斯和101岁的妻子格温。这一天，他们之所以成了美国的新闻人物，是因为在离婚率不断攀升的美国，他们俩创造了一项纪录，婚姻维持了78年。



朱利想，《幸福婚姻法则》一书的代言人，非他们莫属了。于是，通过新闻部门与他们取得联系，很快得到答复。说，可以！不过，他们得把书稿先看一下，以免一些冒牌的婚姻专家打着他们的旗号，推销自己的理论。他们并嘱咐作者最好能把书浓缩一下，因为都已是老眼昏花的人了，没有精力通读书稿。根据吩咐，朱利对《幸福婚姻法则》删繁就简，概括出“一大原则”、“三大定律”、“五大共识”。



一、好人原则

找一个好人，自己做一个好人。谁能做到这一条，婚姻想不幸福都难。



二、三大定律

1、太太定律

第一条：太太永远是对的；

第二条：如果太太错了，请参照第一条执行。



2、孩子定律

第一条：孩子永远是孩子，丈夫也是孩子；

第二条：当丈夫引起你的不满时，请读三遍第一条。



3、家产定律

第一条：除了一张双人床外，其他一切东西都可有可无；

第二条：当日子过得愈来愈烦琐，请共同高声朗读第一条。

夫妻双方若能遵守这三大定律，世界上所有的婚姻问题专家，都将另谋出路。



三、五大共识——夫妻双方要有这样的共识：

1、爱情是把两个人拴在一起，婚姻是把一群人拴在一起。

2、结婚意味着杀富济贫，在金钱的支配上不能搞平均主义，更不能斤斤计较。

3、夫妻之间一旦发生矛盾，出面劝说的人越多，矛盾越是不容易解决，必须学会自我

消化。

4、婚姻是一部机器，故障在所难免，离不开日常的调适和维护。

5、家庭既然是难言之隐的避难所，婚姻就应该具有藏污纳垢的能力。



朱利把提纲寄出之后，很快就收到了兰迪斯先生的回信。信是这么写的：朱利先生，您所提供的幸福婚姻法则，我读给太太听了，她差一点笑死过去。她说你的法则要是提前两天收到就好了，这样昨天与我的一场争吵就可以避免了。不过，她还是让我在这儿表示对您的感激。她说，她以后会比照着去做的。当然，是否能行得通，她心中没底。在这儿，我想私下里告诉你一句话，它是我太太曾经给我说过的：“在这个世界上，即使是最幸福的婚姻，一生中也会有两百次离婚的念头和五十次掐死对方的想法。”



不久，温格·朱利的《幸福婚姻法则》出版了，兰迪斯太太的那句话被印在封面上。