Here's how brave Lucas is

His 4 year old brother seeking comfort and protection from 2 year old Lucas. Watching the Transformer cartoon from Netflix.

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.

If you see other leukemia blogs, please let us know

Fighting leukemia is a long process and it could be lonely. Because lucas is a boy, he will go through 3.5 years treatment and have one more year treatment than girls in the similar conditions. There will be a lot of unknown situations for us ahead, our friend found a blog (http://beardsleys.blogspot.com/) for us yesterday, and I went through all the posts this morning. The information there is very , very helpful for us, it tells us what to expect ahead. So if you see any leukemia blogs, please let us know, and this will be the best help for us right now.

MRD negative

At the end of Induction Phase, a bone marrow aspiration is performed and the bone marrow sample is sent to a lab to be analyzed.  Usually the result comes out in around 3 days.  MRD -- Minimal Residual Disease is THE criterial current ALL protocols use to decide what treatments come next.  MRD negative means there's no blasts (cancer cells) found in bone marrow (current technology detects < 0.1%) and the induction treatment achieved its goal to quickly induce the body into cancer-free stage.

So our Lucas will continue as high risk.  Tonight we need to make decision on whether to participate clinical trials.

Will meet the doctors tomorrow to discuss results

2pm. And they will tell us what are the next steps.

Result is still not out yet

The frustrating part is that the hospital is such a gigantic organization and you get different answers when you talk to different people and many times you cannot get to talk to the person who gives you answers that you like all the time. I waited very anxiously, then called the clinic and left a message. A nurse called me back telling me the MRD result won't be back till Thursday. I tried to explain to her that I only want the initial path otological result, and the doctor told me they would be available. But the system doesn't have it. The nurse said she would make a note that we are still waiting. I guess everybody is busy and I should just wait.

请大家帮忙sign petition, 为了更多小儿癌症awareness

虽然最近20年的小儿癌症存活率大有提高，但其实在医学研究上，不成比例的资金花在了成人癌症上，因为毕竟小儿癌症在绝对数量上是有限的，发明出的新药的销售也是有限的。在这个利益引导一切的社会，没有销售量，就不会有投入。而且癌症研究常用的5年存活率，对小儿来说是完全不适用的。成人癌症高发于50-65岁，5年之后随着人的自然衰老，死因可能很复杂。而对于我们的孩子，对于我两岁的小儿子来说，5年之后他只有7岁，生命才刚刚开始，不是吗？如果他被用的药只关心他5年存活率，我每天给他喂药的时候是什么样的心情？

小儿癌症需要特殊的研究人员花费更多的精力来研究为什么癌症会发生在我们原本非常健康的孩子身上，也需要去研究怎么用副作用最小的药来医治我们的患儿。可能你原来以为小儿癌症是很遥远的事情，我以前也这么以为，直到它无情地发生在我身边朋友，又发生在我自己孩子身上，短短一年间，天翻地覆。

这种petition过去有很多，将来也会很多，到底有多少成效，我们只能说，每次petition都让更多的人知道我们之间有孩子在受苦，有家长在深夜里无助地哭泣，日积月累，希望能有朝一日起到些实际的效果。

欢迎转发给更多的人知道。可以分享我的博客 crystal-sharing.blogspot.com 。谢谢大家！

需要设立帐号后才可以签，不需要除了名字和邮箱以外的其他信息。

PLEASE sign here!

Now, we wait

Lucas had his Induction Treatment day 29 (technically day 31 as day 29 was a Saturday) bone marrow aspiration (together with a spinal tap). From the bone marrow sample, we will learn how much leukemia cells there are still in his bone marrow. We hope none, as the induction treatment usually kills all cancer cells there is in blood stream and bone marrow. The initial result, by counting the cells under a microscope, will be out tomorrow and I will be waiting for a call from the doctor. Really nervous as it means a lot for his treatment going forward as well as his chance of survival and be cancer-free. Please keep us in your prayers!

light the white house petition

I find this petition from Tyler Alfriend's website, please spend 2 minutes to sign the petition to raise the awareness of childhood cancer.

We need your help.  Not a donation, just a couple minutes of your time....

The #1 obstacle is saving our children with cancer is funding .  The #1 problem with funding is awareness.

So here is something you can do, right now.

September is National Childhood Cancer Awareness Month.  This September, the entire childhood cancer community wants to see the White House lit in GOLD to raise awareness of the tragedy of childhood cancers.  

The White House has an online petition service and is required to formally respond to any petition that receives 25,000 signatures within the allotted time frame.   The petition: 

Light the White House gold for the month of September to honor pediatric cancer fighters and bring light to the cause has reached nearly 4,600 signatures in just 3 days.  But it only has until February 7, 2013 to reach 25,000.

Please visit the petition site at https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX to sign in support.  Please share the link with friends and family.

We the people (against childhood cancer) can have our voice heard and our heroes honored this September, please join us in this campaign.  

Read more: http://tyleralfriend.blogspot.com/2013/01/light-white-house.html#ixzz2Hrid1R00

Play time

And they don't need naps any more. But what about mommy who usually takes naps during weekend?!? I guess I have to grow up as well!

Day 28

小宝的风险系数

白血病的研究还在进行时，小宝的治疗方案是2012年4月才开始实施的，当然和之前的版本差异也不大。在3-4年的治疗过程中，如果研究表明某种药需要改时间剂量，我们的方案也可能改。就连区分风险系数，我这里说的也是此时此刻被采用的。看一本家长写的关于白血病治疗的书，之前还有低风险。现在没有了，可能是因为研究表明低风险也不能减少药物的使用，否则会影响治疗效果。 不同的风险系数就有不同的治疗方案。小儿白血病分为中风险，高风险，和超高风险。风险越高越难治，越有可能复发和转移。风险越高，用的药就越多剂量越大。超高风险还需要放疗和用一些长期副作用不明的新药。 

小宝发病时的白细胞数量高达9万5，高于5万这个分界线，所以他属于高风险。其他区分风险的因素有年龄（低于1岁或高于10岁的风险系数大），中枢神经系统受侵情况。一开始发病的血象和骨髓细胞遗传分析决定了一开始的风险系数。在治疗过程中只可能变的更高。骨髓细胞遗传分析结果出来的比较慢，如果有一个特殊染色体变异（3%的病例），就会让风险系数升高。一开始中枢神经系统没有受侵，并不代表之后不会被受侵。所以即使没有受侵，还是定期的做脊柱穿刺，监控和给化疗的药。有一些染色体变异表示是比较容易治疗的白血病，但不会影响用药。 

第一疗程（为期四周）结束后会再次测量骨髓中癌细胞（不成熟白细胞）的比例。如果高于5%，表示这是对药物不敏感的白血病，就会变为超高风险。我们下周一抽骨髓，5天内会知道结果，就是在1月21日之前。在知道这个结果是好消息之前，我们还是很紧张的。

Day 25

No bad news from cytogenetics result.   Actually some of the chromosome anomaly is associated with good prognosis if Lucas's leukemia were standard risk to start with.  But since there's no  chance for Lucas to be downgraded from high risk to standard risk, we are happy as long as he stay as high risk and won't be upgraded to very high risk.

Here's a video of them watching to movie Sinbad at home.  Right, it was such a good movie that I bought it so we could watch it at home.

Day 23

Got two videos to share with you today. As you can see from the videos, Lucas is doing fine. It's hard to believe that he is very much sick and receiving high doses of strong chemotherapy.


Tomorrow is another chemo day. As we did last Monday, they will first access his port to draw blood. After they make sure his hemoglobin is above 8 and platelets above 20, they will give him two chemo medicines through his port.

 His initial cytogenetics result is already out and the doctor will discuss it with us tomorrow. Both Jianwei and I are rather nervous about it. The call on 12/13 from our pediatrician to inform us that we needed to take Lucas to ER right away because they thought Lucas had Leukemia is the beginning of our worries. We will need to learn to deal with the nervousness with every test. Maybe I should practice meditation and yoga daily so the anxiety won't be a toll on my body.

What we were talking on the day when Lucas was diagnosed

I never thought Lucas would have leukemia. Back in May (05/24/2012) when Lucas had frequent bleeding nose, Xiaoyi took him to see doctor and requested blood testing. Everything was fine back then, and I thought this would never happen to him. Here was the IM chat hisotry I had with xiaoyi on 12/13/2012.

11:34 AM Xiaoyi: Doctor appt for Lucas

  4:45

 me: ok

  today

11:35 AM Xiaoyi: Yes

 me: i can take him

 Xiaoyi: I will take him

 me: ok

  did u talk to my mom?

 Xiaoyi: No

 me: for cold hand?

 Xiaoyi: Can you try to call?

 me: and general fuzzy

  ok

 Xiaoyi: I worry

I actually didn't think there was a need to take him to see the doctor because he seemed recovering from the fever after the Thanksgiving holiday.

I put a link on the right side which shows all Lucas's blood count, and if you are interested, you can take a look what his blood count was in May , on the diagnose day, and how the  chemo is killing his bad cells and good cells.  He is on treatment AALL1131, and we will know one testing result on next Monday which will possible change his treatment plan.

Day 21-22

Lucas is energetic and playful, so much so that he doesn't even need naps every day.  But at least he still sleeps through the night most of the time and that gives us good rest at night.

We installed a commercial paper towel dispenser at the half bath for better hygiene during hand-washing.  We will install another one upstairs as well.  Also we bought a case of 12 hospital grade hand sanitizers.

More on Statistics

unfortunately it's not as simple as 80%

Discharged!

His ANC today is 22, an improvement from 0 for sure. No temperature for more than 24 hours and blood culture stayed negative for 48 hours. Sometimes low ANC itself causes fever and that's probably the case for Lucas's fever this time around.

We will be back to clinic for chemo next Monday and would expect another dip in ANC. So I will still be monitoring his temperature every 4 hours. Let's hope with him eating much better, his immune system will come back strong!

The movies we watched and loved in the past 2.5 days are: Sinbad and Madagascar 3 (or in Lucas's language, the pirate movie and the angry tiger movie). Lucas also likes Shrek 3 but I think it's in no comparison with Shrek and Shrek 2.

Day 19

It's another quiet day in the hospital. Lucas has a lot more energy and appetite. But his ANC level is still zero, which means his immune system is non-existing. Low ANC alone is not a reason to admit a patient, but it's a reason not to discharge a patient. He won't be discharged until they see an improvement of ANC. I'm counting the days and the earliest is probably Saturday. And his next chemo is next Monday and with every chemo, his ANC would drop again.

My heart races every time I test Lucas's temperature at home. So actually I feel more relaxed at the hospital. Still, Lucas needs some activities other than TV and (very limited) story time. So we hope we can go home soon and he can stay fever-free so we can stay home.

Day 18

Making ourselves at home

Lucas's fever was gone after one single dose of Tylenol and he shows no sign of infection anywhere.  But the doctors said we made the right decision to take him to the ER since with his port, infection can progress quickly and be fatal.   His hemoglobin went down to 74 and platelets down to 17 this morning so the blood transfusion has started.  We will be able to go home after he is fever free for 24 hours and the blood culture remains negative for 48 hours and when his ANC is trending up.

This morning I enjoyed making the bed, organizing the drawers and cabinets, and repositioning the chairs to fit our needs.  Hopefully our stay is short and uncomplicated.

Happy New Year to every one!