无言的悲伤-2008年08月06日

今天收到关于小婴儿Aidan的近况报告，心一下子沉到了底。Aidan是我同事Ruth的儿子，去年6月出生，在他五个月大的时候被诊断患有恶性横纹肌肉瘤，当时CT扫描显示肿瘤没有转移，据估计有70%治愈的可能。他的妈妈因此打消了回来工作的念头，注销了读着一半的博士课程，专心留在家中照顾他。


孩子的情况一路恶化，化疗做了好几个回合，开始的时候他对化疗还多少有点反应，肿瘤曾一度缩小，但后来孩子对化疗逐渐完全失去了反应，肿瘤再一次增大，孩子因为化疗的缘故免疫能力全面崩溃，几个月以来一直挣扎在各种感染中，大部分时候靠鼻饲为生。因为化疗无效，手术成为了最后的救命稻草，但即便手术可以去除整个肿瘤，这也意味着他将会留下很多严重影响将来生活质量的后遗症，包括瘫痪和性功能缺失。


难以想象对一个年轻的家庭来说这是什么样的考验。Ruth和她的丈夫Neville都是虔诚的基督教徒，在教堂的礼拜活动中相识相爱，于06年2月结婚。结婚前两个多月Ruth被诊断为皮肤黑色素瘤，幸好还在早期，手术比较成功，但当时也算是一场很严峻的考验了，没想到在他们的孩子出生后，还会遭遇这样的一场精神情感的全面浩劫。


手术的日期最初定在7月30日，下面是7月30号以后我收到的关于Aidan的email。


2008.7.30 6:37pm

Hi everyone,

Unfortunately Aidan’s surgery has been cancelled as the intensive care unit is too full to take him post-op. Our oncologist has gone out of her way all day to try and wangle a bed but it came down to an absolute inability to find paediatric trained ICU staff to look after him. The icu is staffed for 16 patients and already has 20 down there with all staff doing extra shifts to cope. Other ICU departments in the state are also full.

This obviously has been shattering for us to deal with today. Aidan has been rebooked for surgery on Tuesday but again it will depend on an ICU bed being available. The surgeons were actually available tomorrow but ICU doesn’t see any patients shifting in the next 48 hours.

In the meantime Aidan will have another CT scan tomorrow to see how the tumour has progressed since the last scan 3 weeks ago and hopefully will again demonstrate no tumour spread.

Thankyou to everyone who rang, texted, emailed etc messages of support for today, we really appreciated them.

Love, Ruth, Nev and Aidan

2008.8.5 4:35pm

Hi everyone,

The news as at 4.30pm today is that the liver biopsy is clear of tumour so the main operation is going ahead (right now). It will go for quite a few hours, so please be praying.

Dianne

2008. 8.5 5:59pm

Hi everyone,

After opening Aidan up this evening, to assess the cancer, they discovered that it has spread throughout his insides. The surgeons have chosen not to operate. Therefore there is little that can be done for Aidan now. I don’t have anymore information to give, but will pass it on when I can. Please prayer for Nev, Ruth and Aidan – obiouvsly they are devastated. In addition, please keep some distance from them until they are happy for contact. I will let you know how things develop.

Kind regards

Marshall

2008.8.6 11:45am

Dear Everyone,

Following on from Marshall’s email last night, our precious baby Aidan’s condition is now confirmed to be terminal. We have had a very rough week following on from last week’s cancellation of surgery. We were informed on Saturday morning that there was a suspicious area in Aidan’s liver that could be tumour spread but could also be normal. He went on to have an ultrasound on Monday which couldn’t confirm or deny what was going on in his liver. The plan was then to do a liver biopsy first up in the surgery and if it was tumour to abandon the rest of the operation but if it was clear to push on with the main operation. Aidan went into surgery about 2pm yesterday and we had an excruciating 2 and a half hour wait to find out whether the liver was clear or not. We got the phone call that the liver was clear and elatedly started packing up his room and made plans to get out of the hospital for a while to pass the time during what we expected was now going to be a long operation. Unfortunately 10 minutes later we got a phone call from our oncologist, Toby who said that they had opened Aidan up and it didn’t look good, could we come down to theatres to talk to him and one of the surgeons. Apparently when they opened him up the tumour had infiltrated his bowel and had spread through the connective tissue around his bowel. It was also apparent that the tumour had ruptured and this would mean that there was tumour seeding throughout his abdomen. Furthermore the tumour was well stuck down in his pelvis and was not able to be safely removed. Aidan’s blood pressure during the operation was not great and the decision was made to do a colostomy to relieve the bowel obstruction that he was developing over the past week and then pull out in part simply to ensure that he didn’t die on the operating table.

This means that due to his resistance to the chemo that he has had and his tumour being inoperable, there is minimal chance of cure now and we have decided to not put him through any more treatment. He is officially palliative and any efforts now will be aimed at symptom control and comfort. At the moment he is in icu, still ventilated after the operation. Even though they couldn’t remove the tumour there was a liver biopsy done and a lot of digging around to see if they could debulk the tumour before they did the colostomy and closed him up. Because of this he is pretty well sedated on pain relief and has tubes coming out everywhere. He is still quite unwell but we are hoping that he will pick up in the next few days and we pray that he will get well enough to be able to take him home for whatever time he has left.

This is just the most horrible position to be in and we can’t fathom how we will get through the next little while and how we will ever adapt to being without him. He has fought so hard over the last 9 months but is going to lose this fight soon. For some reason God is going to take him home and we pray that he gives us the strength to keep going without our precious boy.

Love, Ruth, Nev and Aidan

发生这样的事情，任何言语的安慰都是乏力的。没有人知道为什么这样的事情会发生在这样的人身上，也没有人能解释为什么所有的真心祈祷都好像被广漠的苍穹所吞噬，而无法上达天听。今天是个悲伤的日子。我只希望，Aidan剩下的日子，可以少经受些痛楚。他来过，被爱过，在他离开以后，他一定也会被真诚的怀念着。也许他还没来得及在这个世界上留下太深的脚印，但在他父母和众多的亲朋好友心中，他会永远是那个即便全身插遍了各种管子，仍然会咯咯大笑的快乐天使。