佳佳嘴巴张不开后续

2009年3月28日至4月1日是爸爸妈妈近年最紧张的几天。在这几天，爸爸妈妈已经确定佳佳已生绝症，正在慢慢离开我们。而我们却束手无策，唯一可做的便是随她而去(至少妈妈这么想，而爸爸会更理智一点考虑到友友和宝宝的需要)。这种无助的感觉非常强烈，无法轻易忘却。这也让妈妈更理解了家里有生绝症小孩子的父母的心情，所谓人间地狱，行尸走肉。

下面是英文原件，由妈妈写给她的老板的email. 内里解释了一切。这也是妈妈在三月底一下子中断写博客的原因。

现在佳佳看起来一点事也没有了。到头来没有医生能解释这是怎么回事，但妈妈已经不担心了。佳佳又回到那个快乐咋呼的小女孩状态了。

May 1, 2009

Dear Peter,

Sorry I missed the wed 9am call.  It is 10am now.  I am in a hospital with jiajia.

I have been through roller-coast since last Sunday.

Jiajia hasn't been able to open her mouth wide for about 2 months.  During these 2 months, I took her to see her PCP and then referred to dentists twice (it first started after a dental appointment).  Everybody thought it was a TMD problem.  A doctor from oral diagnosis recommended 200 ml motrin every 6 hours for 2 weeks. He said no x-ray, ct scan or mri would be able to reveal the problem.  It is just an inflammation problem.  We did it for two days.

Then last Saturday, I took her to urgent care because she started to complain about headaches, fatigue, aching ears and she had low degrees of fever for several days if not taking motrin.  And even with taking motrin, she can not open her mouth wide either.  She lost 1.5 kg during the two months. 

The Saturday urgent care doctor gave her blood test (first time in the 2 months who thought of doing so).  It showed elevated level of cpr(4.7) and esp (58).  She called the next morning suggesting us to go to er room, because she was suspecting some infection which could be life-threatening.

We went to er room and the physician took a ct-scan for jiajia.  It showed a mass growth at her masseter muscule.  Things turned out serious.  They took mri and almost assure it is a rhabdomyosarcoma..

We were sent home with an appointment with the top head-and-neck surgeon here on Monday afternoon and a biopsy on Tuesday morning.  Dawei and I were so frightened.  I regretted so much that didn't take action when she started not being able to open her mouth.  I cried a lot and couldn't sleep a bit.

We actually prepared that jiajai would do chemo therapy right after biopsy.  So we took pictures and videos etc before she went to biopsy.  In the meanwhile, she seemed really fragile.  She continued to have fever, severe fatigue (it seems to progress daily, which was very frightening).  She couldn't finish a shower and I had to dress her up.  Then she complained about chess pain and tummy pain.  She had nose bleeding twice at a night.  Every complaint she had frightened me.

We went to the hospital for biospy at 6am.  Jiajia was at surgery room from 8am.  It was scheduled for 2 and half hours.  But we waited and waited, until 5pm we didn't see jiajia come out.  We poured so much tear and thought she was dying.  She must be in stage 4, and the cancer must have spread.

Then the surgeon came out and told us that they couldn't find any tumor!  The only thing they found was musule tissues, maybe inflamation cells, and dead inflammation cells.  They were stunned that they couldn't find anything, so they kept trying to find something cancerous which was indicated by the ct scan and mri, until they took out 10 pieces of stuff and the pathologist told them not to take more, because he couldn't find anything in the samples.  And the radiologist told them they were on the right spot of the mass (or tumor as what they thought was)!

So now they said they can not give a diagnosis.  They are giving jiajia antibiotics and steriod for inflammation.  Hopefully jiajia responds to the drug well and she is able to open her mouth.  Otherwise, in two weeks when they are going to give her another mri, if the mass has grown, they might have to do more procedures to find out what that mass is!

I didn't have your cell phone number with me when dawei and I were waiting at the hospital for jiajia yesterday.  Otherwise you might have heard the loudest cry that you ever had in your life :)

I am not relieved yet, but I think there should be no reason for jiajia to have cancer!  Both of our family are pretty healthy (dawei's mom died of colon cancer in her mid 50's, but I think this is more like a life-style cancer not a genetic cancer), we have healthy life-style, and we are good and responsible people and we shouldn't be so extremely unlucky …

But I know having cancer is not reasonable.

Well, I am all happy now, with still concern on whether she is able to respond to the antibiotics and steroid.  Jiajia was in surgery for 10 hours, and she is doing fine and will be discharged this noon.  She still has numbness on her right face because they opened a space from her inside mouth and might damage a nerve (or some?).  The doctor said she might have numbness for about 6 months!   I feel sorry for her having to go through this, but at the moment, it seemed there was no choice but having a biopsy as soon as possible.

During the whole process, all I thought was how I pushed her hard to excel in her study, do her piano and other thing, and how good an angle girl she has been although having such a cruel mom.  I was so guilty to be such a pushy mom, and ignoring her being unable to open her mouth for 2 months!  Now I should learn my lesson, just being nice to her, spoil her and trust her that she would take good route to her own destiny :)

Well, that is my story that I must share with you.  I wasted so much tears, and was so frightened.  Hopefuly it is all gone and we will get back to the happy life or even happier, because mom will be more relaxed :)

During the process, I thought of you a lot because I don't know what you would respond in this situation.  I wanted to call you yesterday so badly to ask if you have heard anyone took 10 hours to do a biopsy!  Things must be so much out of control!  And whether jiajia could tolerate being in a surgery for 10 hours!  At the end, I was not praying for jiajia not having cancer, but praying for being able to see her fine after the surgery.  It is like I get back jiajia's life, after feeling jiajia's slipping away from me and I not being able to grab her.  This is such a horrible feeling!  I haven't been able to sleep for 2 nights and I still can't.  My brain is too much stimulated and I don't feel tired!

I don't kow how to end this story, but now I should focus back to whatever I was doing on my work :)

Now I know life is more important than anything!  Not anything could compare to a healthy, jumpy, screaming, silly jiajia (she is a really energetic and simple-minded girl)!  I won't care too much if she has completed her homework, has done a piano piece nicely, or has excelled at anything.  I just want a healthy, vivid and wild jiajia at my side :)

Lan

[gongmom]

thanks for sharing this. It was soooooo scary. Thank God for the miracle.