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!

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...