Cytoxan – A Little Miracle

Living with multiple sclerosis is an emotional roller-coaster! Before the Cytoxan (Cyclophosphamide) treatment at Johns Hopkins in 2008, I had no hope of the life I planned on living at the age of 45. I was honestly ready to meet My Maker, I wasn’t suicidal, just ready to go. I’d tried all that the medication the neurologist had to offer and I was going down, needing in-home health care.

My mom found a test-study provided by Dr. Kerr and Dr. Brodsky at Johns Hopkins, I applied.

When I was given the ‘go’, my mom and step-dad flew me down. We arrived in Baltimore, Maryland in the middle of the night June 26th. We moved into our very disappointing apartment, $2400/month for a DIRTY, mouse infested rental.

I had my first appointment with the nurses and doctors that day. I was accepted immediately and had the Hickman put in the next day. I checked into the hospital two days later for the 4 day Cytoxan treatment.

Mom thoroughly cleaned the entire 2 bedroom, 2 bath apartment while I was in the hospital, knowing that I would be susceptible to all kinds of sickness with no immune system.

I was released from the hospital on day 5 and headed back to the now clean apartment. I didn’t have a wheel chair so I sat on my rickety walker while my parents pushed me to the room until Fred borrowed one from Johns Hopkins.

Mom and Fred drove me back to the hospital daily to have my blood tested and receive medicine to boost my immune system.

We had wonderful, reassuring visits with other patients in the waiting room. We were all going through similar situations and became instantly close with each other.

My hair started falling out on day 12 and by the time I was loosing it by the handfuls Fred shaved it completely.

We had the delightful surprise of visits from my beloved Aunt Marian and a great friend of my daughter’s Patty Tanner.

God uses people to perform miracles in our lives on a daily bases and I felt a miracle happen. I am thankful for many people in my life who made this possible. Dr. Brodsky and Dr. Kerr gave me the gift through their research and service, my husband, who couldn’t be with me because he was needed at work (to provide the insurance), Mom and Fred for getting me there and paying all the expenses to the tune of thousands of dollars.

Mom says we got a small miracle while we were hoping for a huge one, and it’s been an emotional roller coaster for us all. I know the Cytoxan treatment gave me a second chance. I’m energetic and happy, living a very enjoyable life. At 47, it’s looks different than I planned, yet I found purpose in my circumstance.

If you feel like it, tell me about your ‘circumstance’ that helped you define your purpose!

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

13 Comments:

  1. Wow Linda…you have reduced me to tears with your story! Only you could be thinking of the other patients whilst you were going through your difficult treatment.

    Your last sentence sums it up…”At 47, (life) looks different than I planned, yet I found purpose in my circumstance.” By sharing your experiences you are giving hope and comfort to others living with MS and that is a huge credit to you. You are an inspiration to us all!
    Louise

    • Louise,
      You are so sweet! No, you’d have done the same! To hear the moans and groans when that is what I had anticipated, it was very hard to hear! Seriously, the only thing I had to complain about was loosing my hair! 🙂

  2. Wow Linda! What an awesome post. So honest and so real! I was moved. Thank you for your support. Denali just ran in here and said, “Wow! Mom, you have to see what Linda wrote on Facebook about your book.” Thanks girlfriend! You rock!
    Cheers!

  3. Wow Linda you never cease to inspire me. I love you video. You are so beautiful and gorgeous eyes. You look very like Kim Kiyosaki – and she is gorgeous 🙂

    I like Louise was very teary watching you. You are an inspiration.

    You have a wonderful Mom and Step Dad which is such a blessing.

    Thanks for your brave and honest post.

    Sue

    • Thank you Sue~ You realize the ‘brave’ was simply posting my bald picture, the treatment was more desperation. And yes, I am so grateful for my step dad, he treats me like I’m his own. My father remarried also, and my step mom is the same way! My kids have 3 sets of grandparents and all of them couldn’t be more perfect! My cup truly runneth over!
      Linda

  4. Linda,
    I’ve known you now for awhile. I’ve always been aware of your condition with MS. what I wasn’t aware of was the journey you have been on as a result. Your testimony is very inspiring. The message you are sharing here will no doubt inspire others with MS and give them hope too. You’re an amazing woman!

  5. Hi Linda,
    Thanks for sharing that piece of personal past with us, the more I learn about you the more I love you.

    You are an exceptional human being and a huge inspiration to everyone that has been blessed with knowing you.

    In Health and Harmony

    Toni

    • Toni~
      I thank you for saying so! I’d love it if you’d share your personal past with us! I would love to see what has led you to be the awsome person that you are! 🙂
      Linda

  6. Hi there to every one, the contents existing at this site are in fact remarkable for people knowledge, well, keep up the good work fellows.

  7. Help me to get cytoxan please

    • Arturo,
      Cytoxan is a drug FDA approved for cancer, not MS. I took part in a test study put on by Johns Hopkins. In the study the MS patients were given a 4 day dose of Cytoxan to see if the effects would cure them multiple sclerosis. Unfortunately, it didn’t work. And most who had the Cytoxan treatment eventually had active MS again. We all got back on the disease modifying medication and the study was abandoned. You can learn about the other medications from your doctor.
      ~Linda

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