給小哈里森的一封信 [登記為骨髓捐贈者+配對成功後捐骨髓的故事]

2012-09-22 05:20:30     作者:Kristine

前言: 去年1月初我不幸罹患急性骨髓性血癌,而且是一定要做骨髓移植才能根治的血癌,雖然我的兄弟和我女兒的骨髓跟我的比對沒成功,不過透過美國全國骨髓中心(National Bone Marrow Program) 很幸運找到合適的骨髓,跟我配對成功很有愛心的女生也願意捐贈骨髓給我,去年4月28日做了骨髓移植,移植過程和恢復一切都很順利. 

骨髓移植一年後向骨髓中心提出申請, 拿到捐贈者的資料後,我用e-mail還有打電話和我的捐贈者聯絡,我問起她是在什麼樣的因緣際會下去登記為骨髓捐贈者,她寄給我一封她去年捐完骨髓後寫的"給小哈里森的一封信",這是很感人的一封信, 我取得她的同意把信(原文和翻譯)公開,就像她信中的結語, 希望我們的故事能夠鼓舞人們致力保持身體健康,最好能夠登記為骨髓捐贈者(18歲到44歲),還有生小孩時捐出臍帶血,拯救別人的性命, 讓別人的故事能有機會有快樂的結局!

今天我還能活著, 非常感謝我的捐贈者!          --- hctsiao

親愛的哈里森,

我從來沒有見過你,但你-一個患有白血病的兩歲寶貴男孩-改變了我的人生,且很可能挽救了一個跟你同樣與同一病魔奮戰的46歲女人的生命。

將近五年前,我的好朋友派特召集了亞裔社區的人們, 努力為你尋找和你相配的菲律賓/白人混血骨髓。這樣的搜索就像在乾草堆裡找一根針:找到一個相配的機率為兩萬分之一到十萬分之一,且 亞裔的捐贈者極為稀少。

當我看到你躺在醫院病床上可憐光頭的照片,我不能對你的痛苦視而不見。在12月的那一天我出席了,用棉花棒刮了我的臉頰內側, 取得我的組織樣本,並加入了"成為配對骨髓庫" (Be The Match bone marrow registry, 底下簡稱骨髓中心)的一員志願者,希望我也許可以幫助拯救你。

我很遺憾,我們沒有找到跟你的骨髓相配的人。我真的希望我的骨髓跟你的配對成功.那你的家人就不必忍受你已不在了的痛苦-我敢肯定,在人生中被所有的愛呵護著的你, 會長大成為一個了不起的人。但是,也許你的家人, 在知道你是一個為其他白血病患者做同樣奮戰的戰士, 會找到心中的平靜。

三個月前我接到一通非常意外的電話,骨髓中心的代表告訴我,我已被確定為一個病人的可能配對者,並問我是否願意接受一些檢驗,以確定我是不是她的最佳配對。那一天我的心為我發言,我回答“是的,我願意。”

我想說,我討厭打針;幫我抽血多次和注射的護士可以證明這種說法-我強迫自己藉由深呼吸來放鬆,且總是扭過頭去,直到針刺進血管。我敢肯定,你也不喜歡那些針。想到你給了我勇氣-你讓我成為更勇敢的人。

根據檢驗結果,他們確定我是這位病人的最佳配對,這是相當不容易的, 在骨髓庫中的每540名成員,只有一人真正成為捐贈者。但我卻面臨著另一項抉擇:接受手術, 讓醫生經由一個大針管從我的臀骨直接抽骨髓來捐贈原始的骨髓,或捐贈從我的血液採集的週邊造血幹細胞。

我承認,我以前從來沒有聽說過週邊造血幹細胞的捐贈,但它聽起來肯定比手術少了很多痛苦,曾接受過這個(手術)過程的捐贈者將它形容為“在冰上摔了很大一跤的感覺。”好吧,我可以告訴你那種感覺如何-我在最近的太浩湖(Lake Tahoe)之旅就曾那樣摔了一跤。現在想想,我摔那一跤是一件好事。當時我正為排定在4月30日舉行的三項鐵人賽(Triathlon)做訓練,但由於受傷,我不得不退出。那是一件好事,因為我的(骨髓捐贈)手續是排在4月26日那一週, 就是三項鐵人賽舉行的那一週。

在醫生向我保證兩種捐贈方式對病人一樣有效後, 我選擇了做週邊血幹細胞的捐贈。當文件簽好之後,準備程序便如火如荼的啟動。骨髓中心寄給我一包有官捐贈細節的資料,他們指定了一位顧問(蘇珊)給我,她幫我講解一切細節, 確定我沒有任何問題。我花了一天時間在加州大學舊金山分校的骨髓診所,做了完整的身體檢查,以確定我是健康的,不會傳染任何疾病給受贈者。

一旦一切都沒問題,我進行了為期五天的一系列注射,每天施打會刺激我的骨髓增生幹細胞的藥物,並最終導致更多的幹細胞從骨髓進入我的血液中。在同一期間,將接受我的骨髓捐贈的女士正在做高劑量的化療,基本上是殺盡越多的致癌白血球越好(譯者按:主要是要殺盡受贈者的骨髓幹細胞),以騰出空間來,讓我的健康的造血幹細胞進駐,並創造新的血液系統。她甚至會變成跟我同一血型(譯者按:如果受贈者的血型和捐贈者的血型不同時,在骨髓移植後,受贈者的血型將變成捐贈者的血型)!

在那五天,指定給我的護士(康笛絲)每天早上來探訪我為我注射。她人非常好,總是提議在我最方便的地方碰面。每次見面, 我的兩邊手臂都接受了注射,我不得不承認,我對針的恐懼感慢慢地開始減弱。

康笛絲非常密切的監測我對藥物的反應:我作了幾個逼真的夢(有些很酷, 像是成了超級英雄,可以讓時間停止前進,另一個不那麼有趣的則是我的男朋友法蘭西斯變成了一個惡魔),但在大多數情況下,我只覺得我像得了流感(疲倦和酸痛)。

康笛絲稱我是她的“運動員病人”,因為有很多次我的手臂肌肉把注射針彈出來,也因為我的身體狀況不錯,我經歷了最小的副作用。

最後4月26日到來了,當天早上6:30當我到了診所,我看到醫院的病床躺滿了所有年齡層的患者-有些人得了白血病。讓我再次想到你在醫院病床上的照片。

護士把一根“抽血”針插入我右手臂的靜脈,另外把一根導管針插入我的左手臂讓血液流回我身上。四個小時的過程中,一個像離心分離機的機器循環了我12公升的血,分離出我的幹細胞。我消磨時間的方式包括睡覺,看晨間電視,與法蘭西斯和其他護士聊天。我覺得像是在捐血。最糟糕的部分是我的手臂必須保持伸直,但我也拒絕了會讓這過程較為舒服的止痛藥。讓我保持堅強的是支持我的朋友和家人,在幹細胞收集室外充滿希望表情的病人臉孔,還有知道我尚不知其名的受贈者將在24小時內接受骨髓移植-當然,還有你。

要一年後我才會知道移植是否成功, 到時候骨髓中心會問受贈者願不願意跟捐贈者見面, 我希望她會說願意。在此期間,我希望她在完全復原的道路上,有機會與她的親人長久且健康的生活著;你和許多人未能有這樣的機會,包括法蘭西斯的母親也是因癌症去世了。

我不得不說,直到現在我才明白一個名言背後的道理,這句名言是“你必須先照顧好自己,然後才能夠照顧他人。” 我一直以為我的活躍生活方式,是一種對自己健康問題的預防性措施。那裏知道我良好的健康卻可能挽救這個受贈者的生命。

我希望我們的故事能夠鼓舞人們下定決心維持身體健康,甚至登記為骨髓捐贈者,讓像你這樣的故事可以有機會有一個美好的結局。感謝你,因為你給我這個(捐骨隨)的機會,同時讓我的心充滿愛和勇氣。

誠摯的,

Kristine

【原文如下】:

A letter to little Harrison

 

Dear Harrison,

I’ve never met you,but you – as a precious 2-year-old boy with Leukemia – changed my life and quite possibly saved the life of a 46-year-old woman fighting the same battle you did.

Nearly five years ago,my dear friend Pat rounded up the Asian community in an effort to find a bone marrow match for your Filipino/Caucasian tissue type. The search was like finding a needle in a haystack: the odds of finding a match was 1:20,000 to 1:100,000 and Asian donors are extremely scarce.

When I saw that picture of you in the hospital bed with your poor bald head,I couldn’t turn a blind eye to your suffering. I showed up that day in December,took a cotton swab to my cheek and entered the Be The Match bone marrow registry hoping that maybe I could help save you.

I’m sorry we never found your match. I really wish it could have been me and that your family never had to feel the pain of your absence – I’m sure you would have grown up to be an amazing person given all the love that surrounded you in life. But perhaps your family would find peace in knowing that you were a warrior for others fighting the same battle.

Three months ago I received a very unexpected call from a Be The Match representative telling me that I had been identified as a potential match for a patient and asked if I would be willing to undergo a few tests to determine whether I was her best match. My heart spoke for me that day,“Yes,of course.”

Let me just say,I hate needles; the nurses that drew my blood multiple times and issued my injections can testify to that statement – I forced myself to relax through deep breaths and always looked away until the needle was in. I’m sure you didn’t like them either. Thinking of you gave me courage – you made me a braver person.

Based on my test results,they determined I was the best match for the patient which is pretty amazing considering one in every 540 members of the registry actually go on to be donors. But I was faced with another decision: undergo surgery and donate raw bone marrow that doctors extract through a large needle from my hip bone or donate peripheral stem cells collected from my blood.

I admit,I had never heard of a peripheral stem cell donation before,but it sure sounded a lot less painful than surgery,which donors that undergo this procedure describe as “taking a hard fall on ice.” Well,I can tell you how that feels – I did exactly that during a recent Tahoe trip. Come to think of it,it was a good thing I took that fall. I was training for a triathlon at the time that was scheduled for April 30,but because of the injury,I had to withdraw. Good thing since my procedure was scheduled the week of the event,April 26.

I opted to do the peripheral stem cell donation after the doctors assured me that both donation types would work equally well for the patient. Once the papers were signed,the prep process kicked into full gear. Be the Match sent me a packet of details,I was assigned a sponsor (Susan) who walked me through everything to make sure I didn’t have any questions,and I spent a day at the bone marrow clinic at UCSF for a complete physical to make sure I was healthy and wouldn’t pass on any diseases to the patient.

Once everything cleared,I underwent a five-day series of injections of a drug that would stimulate marrow growth in my bones and ultimately cause more stem cells from the marrow to enter my blood stream. During the same period,the woman receiving my donation was undergoing aggressive chemotherapy treatments to basically kill as many cancerous white cells as possible to make room for my healthy stem cells to come in and create her new blood system. She’d even become my blood type!

During those five days,my assigned nurse (Candice) visited me every morning to deliver my injections. She was extremely nice and always offered to meet me where it was most convenient. I received an injection in each arm during every visit and I have to admit,my fear of needles slowly started to wane.

Candice monitored my reaction to the drug very closely: I had a few vivid dreams (some were cool like being superhero that could stop time and one not so fun when my boyfriend Francis turned into a demon),but for the most part I just felt like I had the flu (tired and achy). Candice referred to me as her “athlete patient” since there was many a time when the muscles in my arms pushed back on the injections and because I experienced minimal side effects on account of my good physical condition.

Finally April 26 arrived and when I showed up at the clinic at 6:30 that morning,I saw the line of hospital beds filled with patients of all ages – some with Leukemia. I thought of that picture of you in the hospital bed again.

The nurses inserted a “draw” needle into a vein in my right arm and a catheter needle in my left arm to funnel blood back to me. Over the course of four hours,a centrifuge-like machine cycled through 12 liters of my blood,spinning off my stem cells. I passed the time sleeping,watching morning television and chatting with Francis and the nice nurses. It just felt like I was giving blood. The worst part was just keeping my arm straight,but I had also turned down the pain medication,which would have made it more comfortable. What kept me strong was the support of my friends and family,the hopeful look on the patients’ faces outside of the collection room,knowing that my Jane Doe recipient would undergo her procedure in 24 hours – and of course you.

I won’t know if the transplant was successful for another year when the registry asks if the patient would like to meet her donor – I hope she says yes. In the meantime,I’m hopeful that she’ll be on the road to a full recovery and have the chance to live a long and healthy life with her loved ones; the chance you and many others did not have,including Francis’ mother who also passed away from cancer.

And I have to say,it wasn’t until now did I realize the truth behind the saying,“You must take care of yourself before you can care for others.” My good health might have saved this patient’s life and all this time I thought I was leading an active lifestyle. as a preventative measure against health issues of my own.

I hope our story will inspire people to make the commitment to good health and maybe even enter the registry,so that stories like yours can have a chance at a happy ending. Thank you for being the reason why this opportunity was presented to me and for filling my heart with love and courage.

Sincerely,

Kristine

 

來源: http://mesotw.com/?uid-152-action-viewspace-itemid-7206

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