archive-org.com » ORG » N » NBMTLINK.ORG

Total: 108

Choose link from "Titles, links and description words view":

Or switch to "Titles and links view".
  • The 100th Day - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    other treatment options Basically boils down to Which options give me a better chance of survival He referred me to a well known regional facility that specialized in conventional BMT s We set the wheels in motion to begin finding a bone marrow donor since no family members were a match for me I was getting sicker basically feeling tired weak and out of breath while doing many simple activities but I had to keep working or lose my health insurance and lose my chance at the transplant After several months of frantic searching a donor was located in Germany Getting ready to head out of state to the hospital was a bittersweet moment Friends and relatives dropped by to wish me well I m thinking to myself Are they saying goodbye Do they know something I don t know Do they look at me and say to themselves dead man walking These thoughts seared through my mind like a hot knife through butter but I was determined to make light of the moment and relieve everyone else s stress Since I figured I was going to lose my hair at the hospital due to chemotherapy and radiation treatments I would allow my teenage daughter to shave my head As a group of close friends and family watched we sat in my front yard and my daughter and wife began to shave my head Then suddenly my daughter blurted out Dad let s make it into a Mohawk After weighing the pros and cons of walking into the hospital with a Mohawk haircut and the possibility that this could be the final fun activity that I would ever do with my daughter I didn t want to disappoint If this was her idea and this is how she was going to remember spending time with her dad then this is how it has to be Someone ran to the store to get gel and red hair dye My wife Lori and daughter Alysia clipped and shaved with renewed enthusiasm My friends cheered as my fuzzy head became as slick as a bowling ball with a big chunk down the middle remaining uncut Everybody got their hands dirty putting on gel to spike the hair and red dye in to color it The next day we headed out of state to Dana Farber in Boston to begin my BMT journey Sure it felt bizarre going through Quincy Market with a Red Mohawk I got a lot of stares at Fenway Park from fans thinking Who is this middle aged weirdo I guess I felt the need to showoff my new hairdo with my family at my side It was fun At the hospital it seemed everyone needed to check in on the guy with the red Mohawk I don t know that I received any extra attention because of my uniquely styled hairdo but people were always looking or stopping by my little germ free bubble room By engaging my health

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_the_red_mohawk.htm (2015-03-27)
    Open archived version from archive


  • Remembering My Dad’s Transplant - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    admirable throughout the entire time in the hospital and even when he came home As for me my attitude wasn t as positive I was frightened about the outcome It was difficult visiting my dad because he was in Boston almost 2 hours away from my house When I did get the chance to visit him I dreaded going to the hospital He literally lived in a bubble He was never allowed to leave the room I couldn t enter the room without thoroughly washing my hands and wearing a hospital mask Not being able to hug kiss or even touch my dad was difficult In addition my mom worked night shifts so I had to live with close family friends As time went on I watched as my father grew weaker He had barely any appetite so he weighed only 102 pounds and he is 5 8 Even if I wanted to give him a hug all that was there were skin and bones To prepare for my dad s homecoming my mom and I cleaned and bleached down the entire house everyday to make sure there were as few germs as possible We even had to find a new home for our two ferrets We got all brand new furniture that was able to be wiped down to eliminate mold and mildew We also got all brand new carpets to help eliminate dust particles When my dad first came home after being in the hospital for four months he wore a mask and gloves until his body got oriented to the environment With all the medications and his catheters and masks it made my house feel more like a hospital than a home When I got sick during the school year I had to move out because we

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_remembering_my_dads_transplant.htm (2015-03-27)
    Open archived version from archive

  • Why I Sew - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    s name to fit should it be Stacy or Stacey Stephanie or Stephie There isn t one aspect of sewing that I don t love It has been my lifelong passion Sewing is a process that has a rhythm of its own from laying out the pattern with respect for the grain pinning right sides together negotiating with the bobbin pressing carefully snipping threads Most of the time minor errors can be ripped out and forgiven but not always I learned through sewing that it s best not to take short cuts to do each step with care marking basting matching pressing At the time that I was diagnosed with chronic myelogenous leukemia there were few options for treatment and none of them were encouraging either interferon or BMT From the available information at the time I could not deny the real possibility of death before I would reach the age of 50 When faced with this reality both life and death became immediate and intensified all of my expectations were altered I envied old age cried at the sight of my pre teen children mourned for the experiences I might not have things I would not see hear or touch I clung to life and became friends with death as I reframed my life as to be fully prepared to live and fully prepared to die Pre transplant was such an intense time protecting my children pursuing treatment options getting my affairs in order connecting with friends and family and for me sewing I had always sewed on a machine and that became impossible because it seemed that I was away much of the time Not sewing was not an option for me because fabric and thread had always been a part of my life and my means of expression So I changed my approach created a quilt top at home by machine and finished it by hand on the road Anytime I had to travel or wait and cancer patients wait a lot I had my old friend in my hands and I continued to stitch stitching by hand beading embellishing and pouring my hopes and anxieties into cloth I was like Rapunzel generating piece after piece and by the time I went in for transplant I had made a series of narrative art quilts that were hung on the walls of my hospital room In my own hand I had stitched the story of how life changes in an instant that this is a journey with a perfect ending whichever way it goes and that in the end all will be well Aside from the art quilts I made quilts for my children Joanna and Jordan wanting them to have the comfort and presence of their mother though I would be away for awhile The narrative quilts were recognized by the BMT community and profiled on nbmtLINK BMTinfonet Novartis Pharmaceuticals calendar and Creative Center for Arts in Healthcare This took me by surprise and continues to be

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_why_i_sew.htm (2015-03-27)
    Open archived version from archive

  • Linking Curing & Caring - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    Curing Caring FROM DIAGNOSIS THROUGH SURVIVORSHIP The National Bone Marrow Transplant Link provides a number of services and resources designed to meet the needs of patients survivors caregivers and health care professionals including Survivorship Programs Publications Information Referral Peer Support Celebrating Second Birthdays Informative Webcasts Emmy Award winning Video Online Resource Library Visit us online at www nbmtlink org or call 1 800 LINK BMT Back to Voices Main page Acknowledgements Never Look Back Traits of a Warrior A Donor for What Those Amazing Stem Cells Got a Joke I Had Leukemia Okay I Smile The Gift of Life One Year Out Believe in Yourself and You ll Come Through with Flying Colors Time is a Friend You Will Feel the Rain on Your Face Again Inspirational Guidelines Achieving Serenity Through My Own Hands Frequently Asked Questions A Lesson in Humility We All Need Hope Just a Closer Walk There Really Is a Light at the End of the Tunnel and Many Sparkles in Between For a friend lying in intensive care waiting for her white blood cells to rejuvenate after a bone marrow transplant Wake up Call Little Flower What Cancer Has Given Me Julie Ann in the Bone

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_linking_curing_caring.htm (2015-03-27)
    Open archived version from archive



  •