Neuroblastoma Blogs – guest posts

I mentioned in Friday’s post that I had discovered a whole new, heart-rending category of cancer blogs – those devoted to children with neuroblastoma, the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an annual incidence of about 650 new cases per year in the US. Many children do not survive this disease.  Today I am proud to present two posts about individuals that have.  Both contain good, insightful writing – my primary criteria for inclusion in the weekly Guest Post feature.

The first selection is by Connie Powell,  mother of Miss Madelyn, who keeps up communication at CaringBridge.org – missmadelyn.  The post speaks for itself.

Miss Madeleine

Miss Madelyn

Dates that change our lives- Dates we never forget- Today is one of them. Nine years ago today- the day Madelyn was diagnosed with cancer. As I look back on May 9, 2000- that day brings back so many painful and sad memories. It started out as a “normal” day with Madelyn being the very sick baby she was. Bob took Allie to daycare and went to work. I took Madelyn to our clinic for her ultrasound of her liver. I had called to get a follow up appt with her primary doctor following her ultrasound, so he could look at all of the mosquito bite like spots that kept appearing on her body- and then disappearing. During the ultrasound, I knew something was definitely wrong. The tech left the room and returned with other techs, to show them what he had seen on the screen. I questioned them if they could see her liver was enlarged. They looked at me with the sympathy look and said yes. Another tech had stuck their head in the door and told me I needed to go upstairs to see Madelyn’s doctor before leaving.

I knew I had an appt, however- they didn’t- so I knew at that point something else was discovered during the ultrasound. Never in a million years did I suspect cancer. We were escorted into an exam room where I held Madelyn as we waited to her doctor. I remember when he walked into the room, pulled his chair right in front of us. He gently started rubbing rubbing Madelyn’s head and asked me what was going on with her. I started explaining Madelyn’s bug like spots- as I was telling him, I knew he wasn’t listening to a word I was saying. I saw the sadness in his eyes- the tears were filling his eyes, and I could tell something was definitely wrong. I stopped in middle of my sentence- and said, “Something is wrong with her.” That is when he said, “Madelyn is very sick. She has cancer.”

In a blink of an eye, the normal life I thought we had lived suddenly was changed. It started out as a normal day…I remember the sunshine and the happiness in our house that morning….and ended with us being in Children’s Hospital- so cold and scared. I remember stopping by the daycare center- pulling Allie into the car with us, trying to explain to a five year old that her sister was sick and we had to go to the hospital. She was so innocent. She saw Madelyn throwing up so many times a day- that was her normal. She had gone with us to previous doctor appts and thought we were going to do the same with her this time. As we said goodbye to her, both Bob and I cried.

I remember all the phone calls we made that day- changing their lives to. I remember hearing the pain in their voices- the fear and sadness they felt. It is like my brain has recorded every minute of that day- and all it takes is for me to hit replay- and I can relive it over in my mind and feel the raw emotions of that day. We had never heard of Neuroblastoma prior to that day. I had her Oncologist repeat that scary word and even spell it for me, as I wrote it on a napkin. Late in the evening, as Madelyn was sleeping in her metal hospital crib, both Bob and I tried to get some sleep in her hospital room- knowing May 9th was a day we would never forget.

Yes, dates that change our lives. Even though it’s been nine years, and Madelyn is doing so wonderful- I have learned to embrace the events of the day. Even though the day is painful to relive, it allows me to truly remember all I have to be thankful for. All the gifts and the lessons we gained, the people who have touched our lives, the friends we have met along this journey – yes, I feel so blessed. Today- I will hug Madelyn a few more times- hold her a little tighter- touch her a little more- smoother her in love a little more- make her laugh a little louder- and make her smile last all day long.

from: CaringBridge.org – missmadelyn

My second selection is written by a young man, now in his twenties, who was diagnosed with NB at the age of six in 1991.  He suffered two relapses, the last in 2006.  Erik Ludwinski is alive, volunteers working with kids with cancer, and writes with perception at CaringBridge.org – erikludwinski

Cancer is so much more than a medical case. It’s a valuable lesson in human behavior under stress. Psychologists have probably examined and analyzed it’s effects in all kinds of situations, recorded typical behavior, and teach it in psychology classes–that I’ve managed to avoid so far–but the reason I feel I don’t need to be taught about behavior under stress, is that I can’t really get away from it. I live in a cancer environment whether I like it or not, so I naturally learned about it from my own experiences.

By now, I think I’ve gotten a pretty good handle on it. I remember bursting into tears with my mom on the ride home from Fargo, after hearing that I relapsed for the first time. Now, four years later when my doctor tells me the cancer is progressing into my head and around my hip, I know how to take the information analytically instead of emotionally. I know when to consider my situation carefully and when it’s best to distract myself with other things. After all, it would be unhealthy to keep myself in a constant state of worrying.

Better yet, I’ve also used my experiences to relate to other patients much more effectively. I can teach them my own methods of dealing with pain and stress. While encouragement from any source is greatly appreciated, there’s something special about someone who can honestly say, “I know how you feel”. This places me in a great opportunity to help others… at least those in similar situations.

By similar situations, I mean cancer patients. Not parents, not siblings, not friends or relatives of people with cancer, but individuals undergoing treatment for cancer. I’ve experienced cancer as a child and as an adult. I know what chemo tastes like, I know what radiation smells like, I know what surgery feels like… but at one point I realized, that was it. I still have no idea what it’s like to see my older brother sick and in pain, too young to understand what is wrong. I have no idea what it must feel like to hold my child ravaged by a disease I have no control over. There’s no book that could describe it either.

I’ve been dealing with cancer for the past four years… but so has my Mom. I have no idea how she must feel each time my doctor tells us bad news. God has given me amazing support through her and thousands of others. I’m secure, but for every person who calls me an inspiration, I hope they understand I would never be as strong without her. It’s not my fault I got cancer and put her through this, but it is my fault for every moment I don’t remind her of how much I appreciate her.

If you have a moment, please remind her how valuable she is and pray God gives her peace through this too.

from: CaringBridge.org – erikludwinski

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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.

Comments

Neuroblastoma Blogs – guest posts — 2 Comments

  1. Hi Dennis,

    The way I stumbled upon your blog is very amazing… seems someone up there is paving the way for me to reach your blog… and especially to read today’s topic on Neuroblastoma.

    First of all, I am not a cancer patient and live in a small country in Asia called Singapore. I have been following a blog of a 4 year-old Singaporean girl called Charmaine, who has been diagnosed with this “Monster” (that’s how Charmaine’s mummy calls the cancer) on 13th Feb 2009. Since then, the blog was started with aim of raising funds (US$350k) to allow Charmaine to get treatment in New York.

    The fund raising is successful, and Charmaine is in New York now.

    I am not sure where you are located, but I guess US. If you, or any of your contacts can pop by to see if they need any assistance, that will be great.

    Charmaine is there with her mummy Cynthia and her 5 years old brother. I do not know them personally. But I imagine they may need some help now… This is her blog…http://ourfeistyprincess.blogspot.com/

    If you have problem in viewing the blog, you will probably need to switch to a newer version of Internet Explorer. I can’t access from my computer, but I can read it when I was using my husband’s iPhone.

    Last but not least, thank you for what you have done with this blog. I wish you and everyone good health and happiness in your daily life.

    Best wishes
    Junita

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