I never knew this....nothing's changed in 51 years

I never knew this....nothing's changed in 51 years

On April 13th, 1959 a child was born. Karen was a healthy and vibrant baby, second child to proud parents, her dad being a dedicated and respected US navy pilot.

Two years later, mum and dad noticed that Karen was experiencing some funny issues. Should their little bundle of energy trip and stumble like that? What was with these damn headaches and occasional episodes of nausea? Is her eye turning? Yet, she seems so healthy...
...

Leaving no stone unturned and inspired by fear and apprehension, Karen`s dad did his best. This man tried everything humanly possible to get the best advice and help for his girl. Karen was officially diagnosed with a malignant tumour of the brainstem in 1961. Just seven months after diagnosis, Karen was dead.

Karen`s father later learned that this time frame was the average lifespan for the unspeakable sickness acquired by his beloved princess. At a time preceding present MRI diagnostics, this horrendous pediatric illness would have most likely been classified today as Diffuse Intrinsic Pontine Glioma, or the most feared term in all of medicine: DIPG.

Parents take the shock and trauma of witnessing their child tortured to death in many different ways. Karen`s father steeled himself and used the legacy of his girl to achieve the unachievable. His quiet disposition disguised the true resolve that burned within. Throughout his life, this man used his daughter`s tragedy as his personal inspiration and later said that the death of his girl was the turning point in his life.

Karen`s anonymous life was not in vain. People would take notice of her dad some day.

That man`s name was Neil Armstrong.

 

Shared from Facebook

Writing in my spare time...

I was asked to contribute to a newsletter for Camps, to share about our family experience at the different camps that we have participated in.  Here is what I came up with:

Our family has been lucky enough to enjoy three different camps at Camp John Marc.  Some might question my use of the word “lucky” – the reason we have gone to camp is that our daughter, Allison, was diagnosed with a rare, terminal brain tumor in March of 2010.  Cook Children’s Medical Center, where Allison received treatment, supports several camps at CJM.  Our first camp was Camp NOW, for families with a child who has a brain tumor.  It was this weekend that we discovered the magic of camp. 

Camp NOW was the first place that we got to spend time with other families who were going through the same things we were.  Child Life had been trying to convince Allison to go to camp for months, and once she was there, she did not want to leave !  We did all of the traditional camp activities, fishing, arts and crafts, and Allison’s favorite, archery.  One of the amazing things about camp is how quickly you become comfortable there.  At camp, you don’t stand out because your kid has bald spots from radiation, or because they are in a wheelchair.  At camp, everyone understands.

Allison, who had previously rejected the idea of a week away from home, now could not wait for Camp Sanguinity.  This time, it was just her and her brother Travis attending.  Things were very different – Allison had been in hospice care for several months.  In addition to the effects of the progression of her tumor, she had been diagnosed with steroid-induced diabetes, was having severe issues with fluid retention, and was wheelchair-bound. Camp was going to be hard on her physically, and we had long discussions with the medical staff about her care.

We drove the kids to camp, as the bus that would be taking the campers was not wheelchair accessible.  We did not hear much that week (which is a very good thing) but on Thursday morning I got a phone call.  Ms. K was calling to say that Allison was having a great time, and wanted to ride the bus home with her friends.  She assured me that they could make it happen, so I said yes.  The memory of that bus pulling into the drive back at the hospital is one that I will forever treasure. I could see Allison and Travis sitting behind the driver on the first bus, and the look on Allison’s face was priceless.  She was happier than I had seen her in months, and I knew it had been worth it. 

We were not able to attend Camp NOW in 2011.  Allison wanted so badly to go, but about three weeks before camp, I knew it would not be possible.  Allison passed away peacefully at home on Sunday, September 11, 2011, the weekend of camp.  She was 11 years old.

This year, on Mother’s Day weekend, we were invited to attend Camp Morning Star, a camp for bereaved families.  We had a very peaceful, healing weekend at camp, and were blessed to again spend time at a place that has become a part of us.  People may wonder why we sent our daughter there, when she was dying, and when we could have said no so she would spend that week with us.  The answer is very simple – we sent her there to live.

'nuff said

Got to share Allison's story and our family experience at Camp Morning Star on Thursday. I spoke to the group who very generously sponsored camp this year. I'm thankful that I have these opportunities to thank those who make a difference in the lives of kids with cancer and their families.