Dancing on Thin Ice – guest post

Sorry for getting off schedule again this week.  I finally went to see my doctors at the transplant clinic about my continuing sinus and cold issuesThey sent specimens to a lab in Kansas that tests for different viruses.  In the meantime I am on a course of clarithromycin. I stopped on the way home for office supplies and locked myself out of my truck.  Tish had to rescue me with the extra set.  I was grateful – but I have done the same for her many times over the years.

Back on schedule is a Guest Post.  This week I found a moving post on the first blog I selected, Dancing on Thin Ice.  BigD describes herself as a “dancing nurse” and dancing instructor.  Last year she lost her young son, Nick, to leukemia.  It seems that the premier institution caring for Nick might have failed him.  A tremendous loss to his family.  And a loss to all of us when the healthcare system fails.

Writing About Trees

I frequently tramped eight or ten miles through the deepest snow to keep an appointment with a beech-tree, or a yellow birch, or an old acquaintance among the pines.
~Henry David Thoreau

My dear sweet son, how I wish you were here with us to see all the snow. How I wish you could be here snowed in with your family. How I wished so desperately for you to remain here with us on earth. How I wish I never had to have a conversation with you about where and how you wanted to be buried. How I wish I could take that pain from my mother’s heart. How I wish I could hold you in my arms and tell you that everything was going to be alright and you would be able to breath again! How I wish that things had turned out differently for you and thus for all of us who love you so and are grieving so hard for you every day. How I wish that just one person had looked a little harder at you and saw the things that I did. How would things be changed? How will I ever learn to live my life without you?

When I look back on last year at this time, all I can remember is how sick Nick was all the time. It breaks my heart to read my notes on his cough, his lungs, his “blasts” back in the CNS despite the IT chemo, the constant battle to get someone to tell me why Nick was feeling so poorly almost five months post transplant.

After Nick’s discharge from his Xmas/New Year’s admission of January 2009, Nick was being seen in the clinic for his treatments. The “clinic” is not where you want to be unless you are well on the road to recovery. For Nick this was not the case and for some reason Nick’s condition just kept going in the wrong direction. The issue is that no one seemed to be paying attention to the subtle changes that were happening. No one was doing a physical or taking a history. No one was taking the time to sit down and actually make an assessment. No was actually looking at the VS that were written down on a piece of paper and entered into a computer with each clinic visit. No one was listening to a distraught mother and excellent nurse who put all this information right in front of their noses and still no one listened, no one took heed, no red flags went up, nothing.

The signs were all there and they were plentiful. The problem was no one was reading them. No one really took the time to get to know Nick in that clinic so Nick became a number. Nick fell through the cracks of a system overloaded with patients. A system with not enough nurses and not enough attention to detail. A system full of very sick patients with no one to listen to their concerns or pay attention to their problems. In Nick’s case, attention to fine detail was needed, Nick did not get that attention and now he is forever gone from my life.

I want someone at Johns Hopkins to take responsibility for this flawed system. I want people to understand the pain they have caused me, my family, and so many who loved Nick. I want them to live up to their own publicity!

Because no one medical person chose to “see” my wonderful son, I will never see him again. Nick’s future and mine as his Mom are forever gone. My life is forever altered. Now I find myself writing about grief, writing about mourning for a child lost, writing about trees.

from: Dancing on Thin Ice

 cancer


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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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