Monday, July 8, 2013

Sweet Home Chicago

Thank you for waiting patiently as we took time away from the blog last week.  As a reward, we decided to answer the riddle that was presented during the last entry.  Drum roll......... and the answer is "your nose".

After a week of spending time with family and friends back in Ohio, we have returned to Chicago our home away from home.  It was hard to leave our daughters behind, but we know that they are in good hands.  Spending most days in a hospital is not what a 9 year old and 7 year old would consider a good time.  Even knowing this, it is hard to not want them to share in this experience with us.  When our family is apart, things feel incomplete.  This is why it was so important for our daughters to be out here last month.  We made many lasting memories that will help carry all of us through the month of July.

Although we are in the midst of the stem cell transplant process, we can't help but feel like followers of those who have gone before us and leaders for those yet to come.  As we have progressed through the research protocol, each day has presented new challenges.  In the beginning, we were faced with abnormal test results and we were able to lean on the advice of the stem cell veterans.  Then, as we were faced with mobilization those veterans were still there to ease our mind and offer comfort.  After my stem cells were harvested I began to feel like I was becoming a leader.  What I was part of would affect the health of generations to come. 

Through each phase of this journey a unique set of challenges have been presented. I have now entered the hair loss phase.  I was told that 14 days after my mobilization chemo, I could expect to lose my hair.  Starting on day 14, I began performing a hair loss test, which consisted of me tugging on a section of my hair to see if it would come out.  So when it happened, I wasn't shocked.  It was on Day 20 that the test paid dividends.  For on this day, as I performed my daily ritual, I was rewarded with clumps of hair.  It was now time to break out the clippers and shave my head.   I was surprised to find out that the tiny hairs left on my scalp are sensitive.  When I touch my head, it feels like little needles pressing into my scalp.  In my opinion, this sensitivity could have been prevented if I would have simply lathered my head with shaving cream and broke out the razor.  My advice for those that have not yet begun to lose their hair, when the time comes don't forget the razor. 

This week I will, without a shadow of a doubt, be going through one of the hardest things I have ever gone through.  I will once again have to rely on the support of the stem cell transplant veterans.  I also cannot forget I will be receiving all the love and support from my family and friends.  Throughout this journey I hope to be an example for all of those who will come after me.  Chicago has become, and always will be, my sweet home away from home.  Sweet Home Chicago!


  1. We love reading your blog! The intranet is such a wonderful tool! We have always been proud of your strength and courage! We continue to be in awe of your love and sweet spirit! You are a wonderful man ( I can call you that with them gray whiskers) and Ann is the BEST.... You are both awesome parents! We love you and miss you!

  2. To Whom It May Concern:

    I thank you for your support. I also agree that Ann is the best. I am who I am mostly because of her.

  3. I think this site is great! I love reading about your adventures. Thoughts and prayers are with all of you.

  4. Lots of love and prayers to you, Ann, your daughters and your family. My thoughts and prayers are always with you guys! Make the most of every second of every day. It is great keeping up with you on your blog. Love and prayers always!! Danielle Barker

  5. Hello,
    I just wanted to let you know that you and your family are in my prayers.
    I also wanted to let you know that I'll be running a 5k in Crooksville ohio this Saturday. I'll be wearing your bracelet and a sign on my back for CIDP/GBS Awareness.
    I commented before about my mom being diagnosed with GBS in 2007!

    1. Cori,

      Thank you for helping to bring awareness to these awful diseases. I would be interesting in hearing more from you about your experiences. I have some ideas floating around in my head and I would be interested in bouncing some ideas your way.

      Thanks again for your support.

  6. Bryan, Know that we are with you in thoughts and prayers and in anyway we can help here in Corning. XXOO, Lil and Family

  7. One step closer... The weeks ahead will be tough, but lean on the love and support you have from family and friends. Remember, Bald is Beautiful!! As always sending you love from Florida. Auntie Barb