Carmen's Story:

From: "Bastien Family"

Sent: February 10, 2000

Carmen was born April 24, 1984, at first all appeared well and she was happy. Little known to her and us an odyssey of pain, suffering, mixed with some joy and accomplishment. As I write this she is recovering from the surgical removal of a large plexiform fibroma from the left side of her head, and the reconstruction of the ear. This story is not written with the object of seeking sympathy but to testify to the power of one little girl, Carmen. The power to overcome suffering, prejudice, pain, and develop into a whole and vibrant person is her victory.

Fist a little bit of family history. Carmen's Mother, Grandmother, Aunt, Uncle, and Cousin all have NF1, in varying degrees of severity. Carmen inherited a time bomb that has given her many challenges but one, she never has developed a learning disability. In the words of one of her former neurologists "Carmen is the most severe cases he has ever seen, but one of the brightest and happiest girls he has met." The neurofibromatosis was inherited down the maternal line.

After her birth no signs of NF were noted but shortly in a few weeks cafe-au-lait developed on her skin. We knew what they were, but hoped it would be a mild case like her mother's. So we happily raised our little girl and moved to Wainwright, Alberta. In a few months Carmen's odyssey began. This was when she first started to walk. Her left leg broke when standing in the local furniture store.

The local hospital put a cast on it and we left it to heal, it would not. After the cast came off it broke again. Off my wife and Carmen went to Edmonton where she was diagnosed as having a pseudoarthrosis, a false joint in the tibia. This is one of the symptoms of NF1. They splinted it and left it to heal for a few months, as well as fitted her for a brace. The leg broke again when they took the cast off. Then the brace maker accused us of breaking her leg. This to my commanding officer, this causing a lot of heartache. We had to get her doctor in Edmonton to write to inform people this was incorrect and the leg would not heal on its own.

Off to hospital in Edmonton again for a bone graft to fix the pseudoarthrosis. This did the trick for a while, but more will come later. That is when she developed another problem. Large lumps were developing in her neck Her surgeon made arrangements to do a biopsy and did one a month later. There were so many large ones she was held over for referral at the University of Alberta Hospital and consulting surgeons brought in from the United States. On further examination it was found that Carmen was in real trouble.

The tumour had invaded her chest cavity and had displaced most of the organs in the chest. Even the lining of the hearts was involved. They had to open her up and remove as much as they could. We almost lost our little girl that day. It was operate or the tumour would suffocate her. She still bears the scar from that to this day. This stabilised her for a while with only the odd tumour having to be removed. Skin lesions started to appear on her neck and spread to her face. At the same time tumour had invaded the left side of her head.

On our posting to Borden Ontario, while in school the kids were horrible. They called her names like Frankencarmen, & Aids Queen. This is also when one of her tumours developed into cancer. This being misdiagnosed, as the pain was not where tumour was. Eventually a neurogenic sarcoma the size of a mans fist was found behind her right knee. Her right leg at the time was her good leg. Pain killers would not work and we had to wait for a bed at hospital. Imagine your child with every breath a scream, and as stiff as a board from pain, and you can do nothing.

The cancer was removed in a thirteen-hour procedure. Dr Zuker of the Hospital for Sick Children in Toronto saved her leg. He performed Vascular and Neuro grafting from the other leg. She during this time spent six weeks in the hospital. She now has two leg braces and is partially paralysed in the right leg but can still walk. She uses a wheel chair to this day for school and trips to the mall as falls can break her bones easily.

Then five years ago I was posted to Bedford Nova Scotia. A new place, new doctors and another fresh start. During this time the Cancer Society invited her and her sister to summer camps. To which she has been going ever since. One more disaster befell her there. She had a habit of taking her brace off, and while in the living room he leg snapped in half and went to a 90° angle. This was very painful and traumatised her sister. This then involved the internal placement of rods into her lower left leg. Which after the third time is now stable (three rods, one broke the other went loose).

One truly happy time came to Carmen and us, we went to Disney, Seaworld, Universal, MGM and Cape Kennedy. One of the doctors put Carmen in for a Children's wish and she got it. Thanks to the Children's Wish Foundation we all got to forget our cares and be kids again. At the entrance to the Magic Kingdom you feel like a wide-eyed four-year-old. They made her very welcome and special characters like Dopey came out just for her, and security held back the other kids, so she could have some time.

Last year we came back to Borden on another posting. The tumour on the left side of her head had now closed and disfigured her ear. She is now recovering from this procedure as I am writing this. She is happy and doing well. She wanted this one done and we left the choice to her. There are many other procedures not mentioned. Stories of pain, healing and triumph. These I will leave for her to tell, as I do not have enough keyboards. It is her story, a child who has risen to a level that would put most adults to shame. She still smiles, jokes, loves, and looks at life with joy. If I ponder my little problems I look at her and they go away. For myself my life experience with Carmen as her father has taught me that some things are a lot more important than material things. A smile, a laugh or a hug are worth more than anything, and now that she is a teenager, a good argument.

Carmen / Added May 2000