Tuesday, July 17, 2007

Gabrielle's Story: Oxidative Phosphorylation Complex I and II


We would like to thank Penny & Gabrielle for sharing their family story with our readers!

My name is Penny and I am the mother of a special needs child who is dying from an incurable disease. Gabrielle is such a blessing to me and our family. I am thankful for the privilege of raising God's "special" child as I walk this journey of life with her.

I have been married to my husband, Mike, for 12 years. In the first 10 years of our marriage we had 6 children. In January 1996 we had our first child, Joshua by an emergency c-section. In January 1997 I delivered our second child Jessica, it was a difficult pregnancy and delivery. One morning, when she was 10 months old, I found her dead in her crib. She had suffocated.

The next year I became pregnant and delivered a healthy baby girl, Grace, in 1999. In 2000, I delivered another healthy baby girl, Gabrielle, but at 4 1/2 months she went into a catatonic state and was placed into a medically induced coma. She was in the hospital for over a month and when she came home our lives were changed forever. She came home with a feeding tube
through her nose and on over 13 medications that she would receive 3 x's a day. Mike and I came home from the hospital with an overload of information from her doctors on how to take care of her and how "gloomy" her days ahead would be. We did not know whether she would live or die, we knew only that God's miraculous hand had brought her home to us. She was no longer our "perfect" little baby. She was very ill, had numerous setbacks, and would need constant twenty-four hour care.

After a lot of searching, endless questions, and medical tests, she was diagnosed with Oxidative Phosphorylation Complex I and II - Mitochondrial Disease, a rare genetic disorder. Although this is her primary diagnosis, she has a list of other medical problems, including a seizure disorder, brain damage, curvature of the spine, vision problems and more.

She is in a wheelchair and completely dependent on Mike and I and the nursing staff. Despite the illness and the many changes she has brought into our life, Gabrielle continues to be our miracle child.

In 2001 I had a miscarriage. I became pregnant again in 2002, and delivered a healthy baby boy, Andrew, in 2003.

From all of this I have learned that there is healing and hope in our Lord Jesus Christ! In spite of our pain and suffering God wants to touch our hurting spirit and heal our broken hearts.

I had always been a Christian, always went to church, always loved God but when this kind of deep emotional suffering began happening in my life my view changed and I began to question God. Does he really love me? Will this pain ever end? Why did you give me a "broken" child? As all of this was going on I began to search for something to help me put things in perspective. I needed to find an outlet for this emotional roller coaster that I was on, one that was positive, spiritual, and uplifting. I needed to find something that talked about having a special needs child, the feelings, frustrations, and challenges that a mother and family go through in raising a special needs child. I needed to find a resource, guidelines, something that would help me process all of the traumatic events of my child's life that would ultimately change my life as a wife, mother, caregiver, and friend. I needed to know that through the pain and suffering God is there, God does love me, and that my child is not broken, she is a precious gift from God and if I will let him he will show me all of this and more.

Families are faced with so many challenges in raising a special needs child, the guilt, isolation, loneliness, fears, and exhaustion are enough to put you on the edge. There needs to be an explosive awareness to the public of what these children go through and the incredible strength of the families that love and take care of them.

Currently, I have written a journal for families raising special needs children. I am trying to get it published. It is a unique Christian-based journal. The questions invite the reader to get in touch with their initial emotions and write down memories that will serve as the foundation of their healing. As they progress, the journal allows them to communicate private personal reflections with no fear of judgment. Ultimately, they begin to feel God's presence, learn to trust him again and lean on Him for strength and hope.

Thank you for opening the door for families to reach out and help others!

**If you have a story that you would like to share about your child, please email me at amy@momadvice and share what you and your family are going through. We would like to use this segment to raise awareness about family issues including physical and mental disabilities that families are dealing with. Our goal is to educate our readers on the difficulties that your family faces each day. Anonymous stories will be accepted, as well as stories that do not include pictures. We will always strive to protect your privacy!**

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Tuesday, July 03, 2007

Beth & Jim's Story: How My Mammogram Saved My Husband's Life


I have an important story to share with all of you that comes from one of my nearest and dearest friends. Dr. Beth has been a regular contributer to our website and has always offered her help and expertise towards my projects. She is a wonderful mother, wife, and an incredibly gifted woman. She is a constant and faithful friend who has a positive spirit about her that brings out the best in everyone around her. She was my first friend when I moved to Massachusetts and one of the people I was most sad to leave when we moved back home.

Beth's husband was diagnosed with breast cancer last October and it was a life-changing event for their family. Not only was this news disappointing, but more disappointing was the lack of awareness that men could even suffer from this type of cancer. Beth decided that she wanted to be proactive and educate people on this disease and how it impacts men too.

This story is in Beth's words and we thank her for sharing them!

How My Mammogram Saved My Husband’s Life
By Dr. Beth

Last October, on the day of my mammogram, I jokingly said to my husband, “Do you know what happens during a mammogram? They say, ‘Put your breast on this plate, Mrs. Conners.’ I put my hand at chest level. “And then they slam a plastic clamp down on top of it!” To my surprise, I felt a lump; but it wasn’t in my breast.

It was in his.

So began our odyssey into breast cancer, or male breast cancer, to be specific. We were lucky: my husband’s cancer was caught early and was very treatable. As I write this, he is through his radiation treatments and is thought to be cancer-free.

Many people told me that his cancer would make me “appreciate things in life” and that I would “learn what was important” from this. However, I already, every day, was thankful for our lives together. I already appreciated my wonderful husband, our two beautiful little children, and our happy lives together. I didn’t need cancer to make me slow down and take stock of what I had: I already was well aware.

But cancer did teach me some things:

* I learned that 1,700 men are diagnosed in the US with breast cancer each year, but that most of my friends hadn’t heard of it.

* I learned that approximately 1/3 of diagnosed men die because their cancer is caught too late.

* I learned that the preponderance of breast cancer resources have the word “women” in them and not “men” at all.

* I learned that cancer brings out the best in many of our friends and relatives, and the worst in others.

* I learned that I will never again feel completely safe and secure in our lives, and that life can be fragile.

* I learned that the very best advice was that given to us by my husband’s oncologist: ‘Go out and live!’

Breast cancer touched my family’s life this past year, and we are stronger for it. But we were lucky. If I hadn’t found the lump, if my husband had not gone to the doctor’s, if he hadn’t opted for the surgery he did, things could have been different. And they are different for hundreds of men each year – men who can’t believe that they can also get breast cancer.

I hope that our story can touch the life of someone’s brother, husband, grandfather, son, or friend to make a difference.

**We hope our readers find these pieces informative. If you would like to share your story with our readers, please email me at amy@momadvice.com. We would love to raise awareness about health issues and how they impact families.**

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Tuesday, June 19, 2007

Melissa & Michael's Story: Children's Melanoma

We would like to thank Melissa & Michael for sharing their story with us and the Children's Hospital of Orange County for facilitating this discussion.

Michael is pictured in the picture to the left. Michael volunteers his time at the Children's Hospital of Orange County, a few hours each month.

We hope our readers find these pieces informative. If you would like to share your child's story with our readers, please email me at amy@momadvice.com. We would love to raise awareness about childhood health issues.


Melissa & Michael's Story: Children's Melanoma

While rare, melanoma is becoming increasingly more common in adolescents and young adults. But because this form of skin cancer is usually associated with older adults, it is often overlooked or misdiagnosed in younger individuals.

For years, CHOC (Children's Hospital of Orange County) has been educating healthcare professionals and the public about the rising incidence of melanoma in young people. Today, The CHOC Cancer Institute is the only program in the region offering expert, aggressive treatment for adolescents and young adults with this deadly disease.

It’s a good thing Michael Driscoll spoke up about the small lump he felt under his thick, dark hair. His mother, Melissa, would never have noticed it if he hadn’t pointed it out to her.
Melissa’s heart sank when she saw the small, black scab on her son’s scalp. She knew it didn’t look good. Fortunately, this happened while they were both sitting in their dermatologist’s office. The dermatologist took a biopsy and was reassuring, but Melissa could tell she was quite concerned, too.

A few days later, on the way home from basketball practice, Michael learned he had the deadliest form of skin cancer. He was only 15. His dermatologist immediately arranged a referral to Leonard Sender, M.D., medical director of The CHOC Cancer Institute. Michael’s parents still remember how Dr. Sender called them back that very same day.

“Dr. Sender told us it would be okay, and that he had worked with numerous young patients with melanoma,” Melissa recalls. “I got the feeling that everything would be okay. Dr. Sender would make sure of it.”

During the subsequent surgery to remove the melanoma, 39 nodes were removed from the right side of Michael’s neck. One was cancerous, and Michael’s cancer was classified as stage III melanoma.

AN AGGRESSIVE COURSE OF TREATMENT

The Driscolls carefully researched Michael’s treatment options and obtained second opinions from other special­ists. Surgery was a given, but not every specialist agreed with how far to continue treatment. Some recommended a “wait and see” approach.

Dr. Sender firmly disagreed. “He said, ‘No, this is melanoma. You need to treat it aggressively,’” Melissa Driscoll recalls. “We listened to everyone and prayed about it. We looked to guidance from God on which way to turn, and it all fell into place.”

Michael and his parents decided to take the aggressive approach, and he began receiving treatment at CHOC in July 2004.

After the first month, Michael continued receiving treat­ment at home. His father, Mike, gave him injections of interferon three times a week for the next 11 months. Michael remembers always feeling tired and a headache that lasted an entire year. He lost some weight and his hair thinned a little.

Showing maturity far beyond his years, Michael never complained. He just made the best of it and tried to rest as much as possible.

Although Michael missed several school days, he was able to keep up with his studies. That year, he even managed to play the small forward position on his school’s basketball team.

A YOUNG LIFE BACK ON TRACK

Michael’s treatment finally ended in August 2005, and he continues to receive follow-up care at The CHOC Cancer Institute. The latest tests have shown that Michael is in remission. Still, Michael has to be vigilant about wearing sunscreen and hats, and he must stay out of the sun as much as possible.

Academically, Michael is on track as a junior at Santa Margarita High School.

Earlier this year, Michael started volunteering at CHOC at Mission through his school. He spends eight hours a month working with the staff and patients on the pediatric floor. At such a young age, Michael knows better than most people, exactly what these patients are going through. But he also knows there are many reasons to be hopeful, especially when cancer is caught and treated early.

And for that, he can thank his mom. Realizing that every-one is at risk for skin cancer, Melissa Driscoll has been routinely taking her children to the dermatologist for years.

“People don’t always think about taking kids to a dermatologist, but melanoma does happen. I believe in being proactive and taking my children in for an annual check-up. They all have very fair skin and a lot of moles, which are key risk factors for melanoma,” she says.

Melissa is quick to give credit where credit is due for Michael’s good outcome. “Dr. Sender is our hero. He has the aggressive personality needed to beat this demon called cancer,” she says. “And I think while medicine is very vital to beating cancer, prayer is the force behind any medication and every believing doctor. God is the reason for Michael’s success.”

What Can YOU do?

Spot a Spot Information

Statistics:

* Skin cancer is the most common kind of cancer; there are 1.3 million cases of skin cancer in the U.S. every year

* One third of people living in southern California will develop some form of skin cancer in their lifetime

* Melanoma, the deadliest kind of skin cancer, kills one person every hour in the U.S.

* Melanoma is the most common cancer in women ages 20 to 29, and the #1 cause of cancer deaths in women ages 25 to 30

* By 2010, about one in 50 people in the U.S. will get melanoma

* Melanoma is one of the top causes of life years lost to preventable cancer

* Melanoma is 95-100% curable if caught early and treated quickly

* 19/20 melanoma deaths might have been prevented by education alone

Prevention:

* People shouldn't be dying from a cancer that is visibly growing on their skin- education is imperative

* We get approximately 80% of our lifetime sun exposure before we are 18 years old

* Having one blistering sunburn under the age of 20 doubles your lifetime risk of melanoma

* Three or more blistering sunburns increase your risk of melanoma five times

* Your chances of developing a sunburn are greatest between 10am and 4pm, when the sun's rays are strongest

* The shadow rule: The sun's rays are less intense at times when your shadow is longer than you are

Skin Cancer Self-Examination:

Examine your body front and back in a full-length mirror. Raise your arms and check your right and left sides.

Bend elbows and look carefully at forearms, upper underarms, and palms.

Examine the back of your neck, scalp, and genital area with a hand-held mirror.

Next, check the backs of your legs and feet, including the spaces between toes and soles

Spotting Melanoma:

To spot melanoma, look for the ABCD's as sited by the American Academy of Dermatology.* If a mole has asymmetry, border irregularity, color variation or change, or a diameter change it could be a sign of melanoma.

Asymmetry -- If you were to fold it in half, the two sides wouldn't match up
Border irregularity -- Jagged or blurred edges rather than smooth continuous line
Color variation or change -- Two or more different colors are present or if the mole has been changing in any way
Diameter -- Any sudden or continuing growth and any mole larger than 6mm (the size of a pencil-top eraser)

About CHOC
Making a mark in pediatric healthcare for more than 40 years and named one of the top children's hospitals in the nation by CHILD magazine, Children's Hospital of Orange County (CHOC) is exclusively committed to the health and well being of children through clinical expertise, advocacy and outreach. CHOC's growing healthcare network includes two state-of-the-art hospitals in Orange and Mission Viejo, several community clinics, a residency program that trains tomorrow's pediatricians, four centers of excellence -the Heart, Cancer, Orthopaedic and Neuroscience Institutes, and a Research Institute that brings advanced treatment to our patients.

CHOC recently earned the "Excellence in Patient Safety & Health Care Quality Award" from the state's leading health plans, and was one of only nine children's hospitals in the nation to be named to the Leapfrog "Top Hospitals 2006" list, based on results from The Leapfrog Group's Hospital Quality and Safety Survey. For more information about CHOC, visit
www.choc.org.

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