罕見遺傳性疾病通常好發於年幼孩童，且通常沒有特殊症狀可以提早發現，只能到醫療中心做過重重精密檢查後才能藉由醫師的專業診斷並開始治療，而骨髓移植正是必要的治療過程，對於病童及家屬來說，這過程中所背負的壓力何其沉重!

這是2015年4月最新刊載的靈氣醫學文章，裡面溫柔且細緻的將靈氣巧妙的結合在令人聞之色變的移植過程中，院方的初心，真是令人感動!與你共享~

Megan Voss: Alternative therapies ease pain for children undergoing bone marrow transplant

梅根·沃斯：替代療法能為接受骨髓移植的兒童緩解疼痛。(2015.4.8) 取自 minnpost 

The bone marrow transplant (BMT) program at the University of Minnesota Masonic Children’s Hospital in Minneapolis is a busy place. Each year some 90 patients, ranging in age from infants to young adults in their early 20s, come from around the world for treatment.

 位於明尼蘇達州的明尼阿波利斯大學附設兒童醫院中，骨髓移植計畫中心(BMT)是一個特別繁忙的區域。每年有90位來自世界各地從嬰幼兒到20多歲的成年患者來接受骨髓移植的治療。

The transplant process, which is isolating and arduous, can leave emotional scars on patients and their families. Last year, with a goal of helping to ease emotional pain, Masonic Children’s BMT launched an Integrative Health and Wellbeing program offering a range of alternative therapies.

這些骨髓移植的過程對患者來說是隔離且艱苦的，甚至能在病患及其家屬心中留下一個難以抹滅的情緒傷痛。在去年，為了協助患者能夠輕鬆的面對這些情緒上的痛苦，明尼阿波利斯大學附設兒童醫院的骨髓移植計畫中心(BMT)，創辦綜合健康計畫並提供ㄧ系列的替代療法。

 Integrative therapies Program Manager Megan Voss, DNP, is focused on lightening the load for those going through the BMT program. Not every patient in the transplant program chooses to take advantage of her services, she said, but many of those who do are thankful.

綜合健康計畫的主要管理人梅根沃絲，將焦點放在減輕這些接受骨髓移植患者的負擔及痛苦。並不是每一個骨髓移植患者都願意選擇她的服務所帶來的優勢，她說:但是大多數選擇此服務的患者都很感謝。

“Six months after I stared working here, some of my patients started coming back for follow-ups,” she said. “Some of the youngest children still remembered me in a positive way. They’d throw their arms around my neck, and their parents said thank you for all I’d done for them. That helped me feel like I’d made a difference in their lives.”

"我在這裡工作的六個月後，有些患者開始會回來找我復診"，她說。"有些年幼的兒童仍然記得我用一個正向的治療方法幫助他，他們會用手臂摟住我的脖子，而父母親則是非常感謝我為他的小孩所作的一切，讓我感覺自己在他們的生命中作出不一樣的改變。"

Last month, Voss and I talked about her work and its impact on patients and families.

上個月，沃絲和我談論到她的工作對於患者及家屬們的影響。

MinnPost: What inspired the creation of Masonic Children’s BMT Integrative Health and Wellbeing program ?

記者:是什麼事情啟發了明尼阿波利斯大學附設兒童醫院的骨髓移植計畫中心(BMT)創辦綜合健康計劃?

Megan Voss: John Wagner, M.D., head of pediatric BMT at the hospital, is a world-renowned physician. He had an epiphany a few years back when his daughter started practicing yoga. The dinner conversations at his home started to change, to include a focus on the health benefits of a yoga practice.

梅根沃絲:約翰韋格博士，兒科骨髓移植的負責人，聞名全世界的醫師。幾年前，當他的女兒開始學習瑜珈後，他頓悟了一個道理。他家的晚餐談話重點開始轉變，包含了學習瑜珈對於身體健康的益處。

He realized that while he had saved many, many lives over the years that he has worked at the hospital, he had failed to tend to a fair amount of physical, mental and spiritual suffering that his patients and their families had experienced. Because of that realization, he decided he wanted his program to provide integrative care. He worked with the [University of Minnesota’s] Center for Spirituality and Healing, forming a partnership with center Director Mary Jo Kreitzer, RN Ph.D.

他了解到他以前曾經救治許多病患，許多人仍然在醫院裡等著他幫忙，他未能意識到病人及家屬可能經驗到身體、心理、及精神上的痛苦折磨。因為這些頓悟，他決定在這個骨髓移植計畫裡增加綜合照護的選項。他在明尼蘇達大學中心裡研究靈性與療癒，並和大學中心裡的主任瑪麗凱絲特-護理博士產生了一個合作的夥伴關係。

Dr. Wagner asked Dr. Kreitzer if she could help him plan a program. I was a graduate student at the center, and Mary Jo asked me and two other students to do a needs assessment and look at what integrative health in pediatric BMT program could look like.

維格醫師詢問凱絲特博士能否幫助他設計一個研究計畫案。我則是從那大學中心裡畢業的學生，然後瑪麗博士詢問我及其他兩位學生是否願意參加BMT的綜合健康計畫，並評估這個研究的結果。

MP: Can you tell me about the population you serve in your program?

記者:你能告訴我參與這個計劃的人數嗎?

MV: Our patients are usually undergoing a bone marrow transplant for cancers or for treatment of rare genetic disorders. They range in age from birth to age 26. We also treat their parents and other loved ones. 

梅根沃絲:我們的患者通常是有罕見遺傳基因病史的癌症病患，需要經歷骨髓移植這樣的治療。這些患者的年紀不一，從剛出生的嬰兒到26歲的成人。我們的服務範圍也包含他們的家屬及所愛的人。

MP: Why is it important to offer patients and their families this kind integrative care beyond traditional medical treatment?

記者:為何醫院提供病患及其家屬這種綜合照護方式多於傳統醫學治療?

MV: Our patients come to us from around the world. One of the recurring themes for them is that they and their families are removed from their support systems when they are here. They have to relocate to Minnesota. Many don’t speak the language. They don’t have the cultural support they’re used to having at home. Many of our patients are seriously ill. It is an incredibly stressful time for them and their families. Because of this, they are hurting in ways that traditional medicine can’t effectively address.

梅根沃絲:我們單位的患者來自世界各地，其中一個反覆出現的重點是，當他們來到這裡時，有可能是沒有家人的陪伴或支持的。他們必須要搬遷到明尼蘇達州。許多人不會說這裡的語言，他們沒有家人在旁也沒有生活文化上的支持，許多我們的患者病況是嚴重的。對於患者及家屬來說，這是一個壓力非常大的時期。正因為如此，傳統醫學在這方面根本無法治療他們在這段時間受到的許多衝擊。

People with leukemia, for instance, have usually had prior rounds of chemo and have been sick and hospitalized before. So they know a little bit more about what to expect from their treatment here. But patients who have rare genetic disorders may not yet feel ill. They’ve likely never been hospitalized.

舉例來說，患有白血病的患者，通常已經有過幾次的化療不適的住院經驗，所以他們對於療程如何進行有多一點的認識。但是罕見遺傳基因的癌症病患也許並不會感覺到不適，他們幾乎沒有住院經驗。

Still, their test results tell us that something is going wrong in their systems and without treatment they may start to feel ill. Because of this, patients and families often have no coping skills developed. The reality of what they will be going through is often a major emotional blow to them and their families.

儘管如此，這些試驗的結果告訴我們，在他們開始感到病痛時，系統裡一定有某些錯誤。因為這樣的緣故，病人及家屬通常沒有發展應對這些壓力的技巧。這個現實讓病患及家屬在經歷這樣的骨髓移植療程中，留下巨大的情緒陰影。

MP: What is the process of bone-marrow transplant?

記者:您可以介紹一下何謂骨髓移植嗎?

MV: Usually a patient and his or her family come in for workup, then they are admitted to the hospital for a week’s worth of chemotherapy. Then there is the transplant process itself. It is usually at least 100 days before the patient is released back to regular life. Everyone is strictly isolated in the hospital at the beginning of treatment. Eventually, as patients start to show signs of recovery, they live in the community, in places such as Ronald McDonald House until they are safe to return to their home communities.

梅根沃絲:通常一個患者及家屬來這裡作完檢查後，他們會先到醫院報到並預計做一個禮拜的化療。然後會有一個移植的過程需要經歷。病患至少需要在醫院待上100天才能回到正常的生活。在療程進行中，每個接受骨髓移植的人都需要被隔離在醫院裡。最後，當病患的生命徵象都趨於恢復時，才能回到指定社區中，諸如麥當勞叔叔之家等，直到他們都被確認已經可以安全的回到家鄉。

替代療法能為接受骨髓移植的兒童緩解疼痛(下)

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