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。
 

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

替代療法能為接受骨髓移植的兒童緩解疼痛(下)

MP: How do you introduce yourself and your services to patients and their families?

記者:你要如何為病患及家屬們介紹你自己及你的服務呢?

MV: First, I let them know what we offer. I explain that I will follow them throughout their hospitalization and back into the clinic. I talk about why I am at the hospital and what I could do for them during their time here.

梅根沃絲:首先，我會讓他們知道我提供的服務是什麼。我會根據他們的住院經驗及回診的次數來做解釋。我會與家屬及病患們解釋我為何會在醫院及我能為他們在住院期間提供什麼服務。

I have four handouts. The first thing I talk about is the mind-body connection.  For younger children, I talk in very simple terms about how our brains and our bodies are connected. I ask, “Have you ever had a fight with a friend or a test that you’re worried about and your stomach began to hurt? That is an example of your brain telling your body what to do.” I explain that it is my goal to help them learn know how to harness that power for good. 

我有四個公開聲明。第一是我會談論身心的關聯性。而對於孩童來說，我會用非常簡單的字句去解釋我們頭腦及我們身體的關聯性。我會問他們，"你曾經有過和朋友爭論或要考試時，因為擔憂而導致你的胃開始覺得不舒服嗎?這是一個說明你的頭腦會告訴身體如何反應最明顯的例子。"我為他們解釋這些東西，是希望能夠幫助他們去理解如何能讓這些療癒能量往最好的方向去發展。

 I also talk about guided imagery. I explain that if they have to do an unpleasant procedure that may help them take their mind away from it. By putting our minds in a relaxed state we can heal or recover faster.  That’s my speil for initial buy-in. I also talk about Reiki. It is one of my go-to therapies. It is such a gentle therapy with no contraindications. For patients who are experiencing severe pain, massage or acupuncture is not always appropriate.

我也會談到引導式想像。我跟病患解釋如果他們曾經有經歷一個不愉快的過程，這可以幫助他從心中抹去。在放鬆的情境下，我引導他們，讓這些傷痛可以被療癒或恢復得更快。這是我最初使用的療法。我也談論靈氣，這是我其中一個使用的療法，靈氣的能量是如此的溫柔且完全沒有禁忌症。對於正經歷嚴重疼痛的患者，按摩及針灸不總是適合每一個人。

MP: How do you work with your very youngest patients?

記者:你要如何和小小孩一起進行你的工作呢?

MV: With infants, I’m actively supporting both them and their parents through the treatment process.

梅根沃絲:是的，我的服務對象包括嬰兒。我積極的支持嬰兒及雙親經歷這治療的過程。

 One of my young patients was from another country. This patient's parents were familiar with Reiki. As soon as I explained that this was something I could provide for them, they immediately latched on to it. I would do Reiki for their child for pain control and to help bring sleep. I’d also do Reiki for the parents to help them deal with the stress of having an ill child. We didn’t speak the same language, but it was a pure healing interaction between myself and this family.

我有其中一個來自其他國家的年輕患者。這位患者的家屬對於靈氣是非常熟悉的。那時當我解釋我能為他們提供某些服務時，他們立刻就採用了。我為這個孩童提供靈氣治療來緩解他的疼痛感，並幫助他擁有更好的睡眠。我也為小孩的雙親做靈氣，幫助他們處理因為擁有一個生病的小孩所導致的壓力及緊繃。我們說的是不同的語言，但是能透過這純淨的療癒力量彼此交流。

MP: Many of your treatments are hands-on, with a focus on soothing touch, which is quite different from the traditional medical treatment these patients are undergoing. Is this key for psychological healing?

記者:你的許多療程都是靠雙手得以進行，將施做重點放在溫柔的觸療，這和病患一般所經歷的傳統醫學的治療方法有何不同?這是關鍵的心理療癒嗎?

MV: One of the things we strive to do in this program is to touch patients. Sometimes the only way these kids have been touched by medical professionals in the last weeks and months is through medical treatment. Much of it is painful. We want to use our treatments as a way to show that not all touch has to hurt physically, spiritually or emotionally. I think pain can occur on all three dimensions.

梅根沃絲:我們力求去做的其中一件事情就是觸摸。有時，這些小孩在整個療程的過去幾週或幾個月內，頻繁的被醫護人員的觸摸。有些兒童是非常疼痛的。我們想要告訴他們不是每次的觸摸都會讓他感覺身體、情緒、精神的疼痛。我認為疼痛會發生在這三個層面。

MP: Could you give me an example of how you use your treatments to build a positive association with touch?

記者:可以請您舉例說明如何經由靈氣療程來建立一個正向的循環嗎?

MV: I have one patient who has had leukemia for four years. She’s 12 years old. Just think about the amount of negative touch she has had in her lifetime.

梅根沃絲:我有一個患有四年的白血病患者，她12歲。在她的生命裡幾乎所有的治療觸摸對她來說都是負向的。

She was experiencing excruciating pain and was we used Reiki touch therapy to help treat her pain. With this treatment, her pain decreased by half. It’s not that the physical sources of her pain had been reduced by that much, but some of her pain was emotionally based. Her pain was reduced by having someone be with her, hold a space for her, acknowledge her feelings and use touch in a positive way.

她正經歷極端病痛的折磨，她選擇使用靈氣來幫助她緩解疼痛。在這樣的靈氣治療中，她的病痛減少了一半。這並不是因為來自身體疼痛的痛苦變輕了，而是有些疼痛是來自心理的。她的疼痛緩解是因為有人陪伴她，與她同在，認同她的感受可以經由正向的觸摸來減輕。

MP: You also offer yoga practice with patients. How can yoga help someone in this situation find emotional balance?

MV: 你也同時為患者提供瑜珈。瑜珈如何幫助病患在這個情境中找回情緒的平衡?

MV: We use the Yoga Calm program at Masonic Children’s. I chose this program because it was developed specifically for children. Several years ago, a social worker from the Minneapolis Public Schools system brought it to Minnesota from the West Coast.

梅根沃絲:我們使用瑜珈來為中心的這些兒童帶來平靜。我選擇這個項目是因為瑜珈能為兒童帶來特別的發展。幾年前，明尼波利斯公立學校系統的社會工作者把它從西海岸帶到明尼蘇達。

By combining mind, body and breath, children work on self-regulation, coping and resiliency. Yoga Calm is guided by five principles: stillness, listening, strength, grounding and community. With practice, the children can access inner strengths that they can carry with them through their lives.

透過結合心、身體及呼吸，兒童學習自我調節，應對並增強適應力。瑜珈能帶來平靜導引於五個原則:寂靜、傾聽、強度、落實、參與。藉由練習，兒童們能增強自我的內在力量，並把這些帶回去他們的生活裡。

MP: What does your typical day look like?

MV: 通常屬於你典型的一天是如何的呢?

MV: My mornings are filled with program development duties. In the afternoon I see patients. This afternoon, I’ll see a 2-year-old and a 5-year-old. I just saw a 10-year-old and then later I’ll see a 21-year-old. It is all over the board. My longest appointments are 90 minutes. Typically they last 45 minutes.

梅根沃絲:我的早晨充滿發展任務的相關方案。下午我會去看病人。這個下午，我將有一個兩歲及五歲的個案需要訪視。我才剛看完一個10歲的患者，然後接下來又看了一個21歲的。這是在所有的理事會。我最長的預約時間是90分鐘。但通常都是45分鐘左右。

With the younger patients, I will usually see if there is something I can do to comfort or calm them or their parents. Usually it is Reiki or massage. With the older kids, it’s more the yoga and the mind-body work. We try to be more active. There are more options of the older kids.

對於年幼的病患，我通常會去觀察我要如何去幫助病人及家屬們更加的平靜與舒適。我最常使用靈氣與按摩。如果是年長一點的，就提供給他們身心的工作坊及瑜珈。我們試著積極的採用多種方案，可以讓這些年長的小孩能多一點的選擇。

For some patients and families it’s just being there and listening. I offer them therapies as well for relaxation and stress management. The 21-year-old’s mom does yoga with us. I’ll visit the room and we will do yoga together.

而對於某些家屬及病患，我們只是同在並傾聽。我提供他們一些像是紓壓及壓力管理的療法。這位21歲患者的母親和我們一起做瑜珈。我將帶他們一起參觀我們做瑜珈的房間。

We practice yoga in the patients’ rooms. I’ve had families where the whole family — even Grandma — does a mini yoga class together.

我們練習瑜珈的地方就是患者的房間。那裏有著全部的家屬-甚至奶奶-也可以和我們一起做一點點瑜珈練習。

MP: How do your patients experience physical and emotional pain?

MV:你可以說說你的患者如何經歷身體及情緒的雙重疼痛嗎?

MV: My patients experience physical pain, including pain in their mouths. They get mouth sores from chemo. They get generalized musculoskeletal pain form lying around in bed. They are so ill for so long. They also experience emotional pain from isolation and fear. For the younger ones that don’t understand what they going through, their trust has been shattered. They think everyone close to them is lying to them. They exhibit anger toward caregivers, nurses, parents and grandparents. They also experience isolation from siblings and school.

梅根沃絲:我的病患會有身體的疼痛，這些疼痛包括在口腔，因為化療而導致口腔潰瘍。他們因為肌肉骨骼疼痛被迫只能躺在床上。他們病得如此的久。他們同時也經歷被隔離及恐懼情緒上的痛苦。有些小孩並不了解為何他們要經歷這個，他們的信任已經破滅。他們認為每一個想要接近他的人都是在騙他們。他們會向主要照顧者、護理人員、雙親及爺爺奶奶展現出憤怒的一面。他們同事也經歷著被兄弟姊妹及學校隔離的痛苦。

The pain parents experience is mostly emotional. Whenever a parent comes here they are told that there is a 20 percent chance that they won’t go home with their child because of complications from transplant.

而對於父母親來說，痛苦是在情緒層面的。當他們來這裡被告知因為移植的併發症，可能有20%的機率父母並不能和小孩一起回家。

That is really hard to hear, and the treatments themselves are hard for everyone in the family. The worst is that one caregiver isn’t enough if there are siblings involved. Usually there are grandparents involved as well. There is often a mother or father stranded hundreds or even thousands of miles away from home without any support.

這真的很難被接受，骨髓移植的療程對於家庭的每個人都是很難被接受的。最糟糕的是一個主要照顧者根本不足夠去關照到全部的同儕，有時祖父母也會一起參與。可以想見通常只有單親，一個母親或父親離家幾百甚至幾千里外來到這裡，沒有其他的支持系統。

MP: Do you feel like your work helps patients and their families?

MP:你感覺你的工作有幫助他這些病患或家屬嗎?

MV: Some days I feel really good about what I’ve done. Some days I leave here feeling defeated. I never feel like I’m doing harm, but I have some patients where you just feel like you can’t do enough to help them.

梅根沃絲:有些時候當我做完我該做的，我感覺非常好。有時我覺得被打垮想離開這裡。我從來不感覺我做的事情會傷害他們，但有些病患還是會覺得我做得不夠去幫助到他們。

I haven’t had any negative responses. Some people latch on to me more than others. I always tell people that this is optional. There is no pressure. I haven’t had any parent say, “This sounds crazy. Get out of here.” And patients and parents have come back and thanked me for what I did for them while they were here. I just want to help make their load a little bit lighter, to ease their pain, make their lives better. That’s my goal.  

我沒有任何的負面反應。有些人認為我的負面反應比別人多。我總是告訴人們這是可選擇的。這是沒有壓力的，我沒有需要向家屬說，"這聽起來太瘋狂了，給我離開!"，病患及家屬總是回來感謝我為他們所做的一切。我只希望去幫助他們肩膀上的擔子能輕一些，去釋放這些痛苦，讓他們的生活可以過得更好。這是我的目標。

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