堂姐的孫子(堂外甥的兒子)丞丞今年5歲,準備上幼稚園大班。

註:堂外甥比我還早兩天出生,也就是Cincia一出生就是人家的阿姨,輩分很高滴!XDDD

從小,丞丞走路就很容易跌倒,家人一直認為是因為他的平衡感不好,也買了矯正鞋讓丞丞穿。

幾個月前,活潑好動的他突然變得沒精神,爸爸要帶他去打球也不想去,只說想在家裡休息。

這樣過了兩個月,家人發現丞丞走路搖搖晃晃,無法走直線,這才帶去台大兒醫看骨科。

骨科檢查結果,骨骼沒有異狀,於是建議轉神經外科門診。

這時堂外甥在友人推薦下,先去找馬偕的邱南昌主任,邱醫師一見到丞丞的症狀就直覺不對勁,立即安排他進行腦部MRI檢查。

影像資料顯示丞丞腦部有腫瘤且有大量積水,嚴重積水導致腦壓過高,必須馬上引流,於是丞丞立即被安排住進淡水馬偕的加護病房,同時主治醫師也換成了楊智全醫師。

馬偕住院期間,丞丞每天抽取的腦積水約莫4、5百cc,真不曉得這麼小小一顆腦袋,竟然可以抽出那麼多的積水....T_T

一個星期過去了,馬偕的醫師並沒有提出更積極的治療方式,此時堂外甥認識的家庭醫師建議去找北醫黃棣棟主任諮詢。

註:黃主任為國內兒童腦瘤權威,榮總退休後,現被北醫聘任為兒童腦瘤團隊召集人。

黃主任看完丞丞資料後,表示可安排兩天後手術,於是堂外甥決定將丞丞轉至北醫進行手術。

手術當天,丞丞早上11點就被進手術室,隨著時間一分一秒流逝,手術房外等候的家人們,焦急的心情有如熱鍋上的螞蟻。

凌晨12點多,丞丞總算被推出手術室,家人也終於暫時鬆口氣......

而黃主任竟然在此時出現,為焦急的家屬解說手術的狀況,如此視病猶親的態度真令人動容。

丞丞因為腫瘤位置緊鄰腦幹,手術無法將腫瘤清除乾淨,僅能切除部分,切下來的腫瘤也隨即送去化驗,病理報告一星期後會才知道。

手術後三天,丞丞由加護病房轉普通病房,Cincia星期天去看他(手術後四天),丞丞雖然一直喊頭痛,卻沒有哭鬧,真的讓人既心疼又憐愛。

希望切片的結果不要是惡性腫瘤,我們一起為丞丞祈禱!

IMG_8970  

《Cincia感言》

由丞丞的例子告訴我們,父母對於孩子的狀況真的要多加留意,要提高警覺心,切莫輕忽微小的病徵。

兒童腦瘤症狀-->請參考中華民國關懷腦瘤兒童協會網站

其實不只是父母對小孩,我們對自己的身體狀況也應多加留心。版友還記得Cincia確診前的症狀只有咳嗽,被當成感冒、鼻竇炎醫治了將近半年,最後才確診肺癌,而且病情惡化速度太快,差點來不及治療,真的很可怕~大家千萬不可不慎啊!

《小花絮

護理師來換紗布,才摸到他的頭,都還沒有開始動作,丞丞就開始大喊:哇!好痛好痛

護理師:我都還沒有開始耶!=.=

丞丞媽:丞丞你也太誇張了喔!阿姨都還沒有換,你叫什麼啊?

引起我們所有人大笑後,丞丞又說:我不想講話,你們可以不要再搞笑了嗎?(拜託~是誰讓我們笑的阿!^^")

小朋友的童言童語真的很可愛......也淡化了病房內悲傷的氛圍。

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  • Kay
  • 孩子 加油。

    願你順利平安
  • 感謝!

    Cincia 於 2016/08/16 17:28 回覆

  • 朵蕊蜜濕地生態園
  • 慈悲愛我們的天父,我們感謝讚美你,
    我們知道我們的一切,都是你賜予的。
    我們的健康和生命,都是從你而來的。
    世上有很多健康不佳、受傷或患病的人,
    他們不能和我們一樣,
    正常地活動和工作,並忍受著不同的痛苦。

    主呀,求你祝福傷病的人,
    賜他們勇氣和忍耐,去接受他們的病苦,
    求您保護病者和減輕其的痛苦,

    願您的旨意奉行在其身上。
    但願您的聖名在其身上顯揚,
    並求你賞賜丞丞和星西亞早日恢復康復,
    重新恢復正常的生活。
    這樣禱告是奉主耶穌基督的聖名求 阿們
  • 阿門~

    Cincia 於 2016/08/16 17:29 回覆

  • 訪客
  • 阿門
  • 阿門~

    Cincia 於 2016/08/16 17:28 回覆

  • David
  • 阿門
  • 阿門~

    Cincia 於 2016/08/16 17:28 回覆

  • Karin
  • 一定會化險為夷的, 加油.
  • 感謝加油~

    Cincia 於 2016/08/16 17:29 回覆

  • Kelly Ku
  • 希望丞丞早日康復~
  • 感謝加油~

    Cincia 於 2016/08/16 17:29 回覆

  • 一起加油
  • 原本是因魚油而找到妳的部落格,沒想到十幾個月後是因腦放療再次來此,也成了潛水常客。
    看了此文忍不住留言,為丞丞心疼外,尤其感同身受(雖然我的年紀都可以當丞媽了)
    我是腦瘤患者,目前情況跟丞丞差不多<--聽醫生說,我的腦瘤是小孩子得比較多(所以是小時就有而逐漸變大到現在才爆發,還是成年才得,已不得而知)
    同是因為位置靠近腦幹,手術後除了留下後遺症(發現時腫瘤已非常大顆)也未清除乾淨~
    現正復健中,但未做後續治療,醫生說化放療效果都不好,是有建議電療,不過怕影響留下的後遺症,想等身體狀況穩定一些再做打算
    不知道是不是危險的決定~
    很不安~但也安慰自己,生死有命,富貴在天~
    祝福丞丞一切平安順遂
    我們一起加油~~
  • 感謝你的分享,我完全可以體會妳不安的心情,因為Cincia腦部的腫瘤也還找不到有效的方法來控制T_T
    不過我們都要放寬心,盡了自己最大的努力後,其餘的就是交給老天爺了。
    一起加油~

    Cincia 於 2016/08/16 17:52 回覆

  • Lin
  • 丞丞加油
    要和cincia姨婆^^一樣勇敢哦
  • cincia"姨婆"聽了很不習慣,哈哈~XDDD

    Cincia 於 2016/08/17 12:23 回覆

  • yayadragon
  • 加油阿
    有這麼多人為丞丞打氣
    一定可以康復的
  • 謝謝大家的加油打氣~:)

    Cincia 於 2016/08/17 12:23 回覆

  • 胃出血
  • 向天神祈願 , 丞丞會好的
  • 謝謝你~:)

    Cincia 於 2016/08/17 12:24 回覆

  • David
  • 丞丞得的是哪種腦瘤? glioblastoma (GBM)嗎?
  • 病理報告還沒有出來,我晚點問問看。

    Cincia 於 2016/08/18 18:11 回覆

  • David
  • From NCI

    With Immunotherapy, Glimmers of Progress against Glioblastoma

    When it comes to the brain, immune-based treatments face some substantial obstacles before they can even reach a tumor.

    The most significant challenge is the blood–brain barrier, a layer of tightly packed, specialized endothelial cells that form the blood vessels in the brain and contractile cells called pericytes. While this barrier protects the brain from threats that may be circulating in the bloodstream, like viruses or toxins, it can also impede the delivery cancer treatments.

    In addition, the immune response to brain tumors is generally weak, “because tumors are very effective at blunting it,” explained Mark Gilbert, M.D., director of NCI’s Neuro-Oncology Branch.

    Nevertheless, studies have now shown that the immune system has sentries that can react to foreign threats in the brain and that immune cells from other parts of the body can travel there, Dr. Gilbert continued, “although the mechanisms that allow that to happen aren’t very clear.”

    These are formidable obstacles for immune-based treatments to overcome in treating brain cancers, acknowledged John Sampson, M.D., Ph.D., chair of the Department of Neurosurgery at Duke University Medical Center and director of Duke’s Brain Tumor Immunotherapy Program.

    “But I don’t think they limit most of the immunotherapy approaches being studied,” he said.
    Checkpoint Inhibitors

    Several immunotherapy drugs known as checkpoint inhibitors are also advancing to late-stage clinical trials in patients with glioblastoma. Checkpoint inhibitors interfere with signals from tumor cells to T cells that, in effect, direct the T cells to stand down.

    Two checkpoint inhibitors, ipilimumab (Yervoy®) and nivolumab (Opdivo®), have been approved by the FDA for the treatment of advanced melanoma and lung cancer, and promising results have been reported for these and other drugs in this class in several other cancer types.

    There’s solid evidence to support testing checkpoint inhibitors against glioblastoma, Dr. Lim explained. In some patients with advanced melanoma, treatment with ipilimumab, which targets the CTLA-4 checkpoint protein on T cells, has shrunk brain metastases. And in some animal model studies, checkpoint inhibitors have eradicated glioblastoma tumors.

    A phase III clinical trial comparing nivolumab, which targets the checkpoint protein PD-1, against bevacizumab in patients with glioblastoma that has returned after prior treatment is currently enrolling patients. Embedded within this trial is a phase I trial testing nivolumab in combination with ipilimumab.

    The Neuro-Oncology Branch has launched an early-stage trial that is testing PD-1 and CTLA-4 inhibitors, either alone or in combination, along with the chemotherapy drug temozolomide, in patients with newly diagnosed glioblastoma. Because of slight differences in how these two therapies work, Dr. Gilbert explained, there may be a benefit to combining the treatments.

    Eventually, he said, a large trial testing them alone and in combination will be needed to determine their optimal use in patients with glioblastoma.

    Dr. Lim and his colleagues, meanwhile, are studying whether administering localized radiation therapy to a brain tumor can not only help shrink it, but also kick start an immune response that could be strengthened further by a checkpoint inhibitor or other immunotherapy—a response referred to as the “abscopal effect.”

    Based in part on findings from a recently published animal model study, they are launching an early-phase trial testing this treatment approach in patients with advanced melanoma that has spread to the brain.

    Ultimately, Dr. Lim believes, combination approaches, consisting of either immune-based therapies or immune and traditional therapies, may offer the most promise.

    “We need to keep studying our options and find the best combinations that are the most effective and least toxic for our patients,” he said.

    Updated: March 8, 2016

    http://www.cancer.gov/types/brain/research/immunotherapy-glioblastoma
  • k212386
  • 勇敢的小孩加油
    祝弟弟早日康復
  • Gary YC LIN
  • 吉人自有天相,丞丞加油,Cincia 姨婆 加油! ^_^
  • 幹嘛叫我姨婆啦!可惡的Gary兄~都被你叫老了!!

    Cincia 於 2016/08/22 11:49 回覆

  • 	失蹤人口
  • 感謝版主分享
  • :)

    Cincia 於 2016/09/04 17:42 回覆

  • 淺水客
  • 目前丞丞還好嗎???
    他好勇敢 好棒 請他要加油喔!
    星希亞 也要加油喔!
  • 感謝淺水客的關心,丞丞目前已經出院了。:)

    Cincia 於 2016/08/31 13:30 回覆

  • 一起加油
  • 哈囉,我是前面有留言的一起加油
    腦瘤狀況跟丞丞很像
    只是我未切乾淨的腦瘤目前長大了,已經手術,所幸這次有清乾淨
    但病理報告出來不好。我是室管膜瘤三期(本來是二期),醫師是說要去化療,而且還是去小兒科。
    方便詢問丞丞目前狀況嗎?有做什麼後續治療嗎?〈-真不好意思,我應該先問我們的腫瘤種類有無一樣
    但我是小朋友腫瘤(連兩家醫院醫師都這樣說)
    後續治療也..應該要問看看治療兒童腫瘤的醫師嗎?
    醫師有幫我排神外小兒科醫師門診,我是想說要不要去詢問第二意見
    因為老實說,我並不是很想化療。因我第一次開刀留下後遺症,我怕無法好好補充營養QQ
    現有些不知所措呢!!
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