Thursday, May 29, 2008

Book Review

I have found an author who can describe sibling loss better than I because she has lived through it. She has a website at where you can read more about her and the reasons behind her book. Sibling grief is gut wrenching pain that no one can easily describe. I would recommend this book for a better understanding of sibling grief, first hand.

The Empty Room: Surviving the Loss of a Brother or Sister at Any Age

By Elizabeth DeVita-Raeburn

The Empty Room is the story of my life with Ted, my older brother and best friend. On a September morning when I was six, I woke up--and Ted was gone. He would spend the next eight years isolated beyond a clear, plastic curtain in a bubble room, where I could see him, talk to him, but because of the risk of infection, never touch him.
I have interwoven my story with the stories of many others who have lost brothers or sisters. Before I found them, many had never had the chance to speak of their loss. The Empty Room recounts their stories, and mine, giving all of us a way to reclaim our lost brothers and sisters.

Visit her website to purchase a copy of the book or get one from your local book store or library. You will gain a better understanding of sibling grief and the depth from which it penetrates

Wednesday, May 28, 2008

Post Holiday Recovery.....and a personal awakening.

Why is it that after a long awaited three or four day weekend, we take the next week to recover? Is it that way for everyone? I could complain about the cold that I have had for the entire holiday weekend, or I could whine about my bruised and swollen foot from where the horse stepped on me. But then I go to work and take care of a 2 week old with a brain tumor. And we admit an 11 day old with acute leukemia, followed by a small child caught in the drive by gun fire of some gang who just went through 6 hours of surgery. Wow, that puts my life into perspective. The pediatric intensive care has a way of doing that to me.
So, I humble myself, and ask forgiveness for complaining about whatever it is I am going through. I remember why I write this blog, and that is to touch and reach out to others going through the fires of cancer or some other equally tragic health crisis. And I pray. I pray for relief of their pain. I pray for the words to help them hold on. I pray for the strength to continue to write and to physically care for those precious children. And I lift up every parent I come into contact with, so they too can find strength to handle what life throws their way.
Weekend or weekday, we all do the best we can, don't we. Nurture yourselves today and give yourselves the gift of forgiveness. Tomorrow is another day.

Saturday, May 24, 2008

Young Adults With Cancer....Resource and Website

Young adults who have cancer fall between the pediatric and the adult realm of information and education. I know they have unique needs and have challenges different than those of pediatric patients or the older adult population. Until now, they have not really had a place for their own expression and information. I have found a wonderful site for the twenty and thirty age ranged young adults. Check out It is an awesome site for education, chats, articles on how to cope, and information on everything from the bowel gas(chemo farts) that chemotherapy causes to how to raise your children while being treated for cancer. The site was founded by Heidi Adams. She also serves as Executive director. I will visit the site myself for continued information and to keep in touch with how young adults feel. As a writer, what better way to stay in touch with those I want to reach out to. Pass this information on to anyone you know who might be dealing with cancer. It is a great place to be yourself. Make new friends here who are more understanding of what it is you deal with,when you have a diagnosis that others really don't want to talk about.
I am impressed with all of the young people whose blogs and comments I have read on the site. Check it out and let me know what you think.

Friday, May 23, 2008

Protect the Children This Day and Everyday

Welcome to summer. The Memorial Day holiday weekend is the perfect time to remind all auto drivers to be aware of the dangers a car poses to our children. Fifty children a week are somehow injured in non-traffic accidents by a motor vehicle. Two of these children will accidentally die from these injuries.
I want to recommend a website for information and education, legislation and information on technology to prevent these incidents from happening to our children. Visit
Here is a list of the types of injuries children receive in non-traffic accidents caused by a motor vehicle.
1. Children are accidentally backed over at an alarming rate. This is a tragedy for everyone and is a preventable accident if only we take the time to look.
2. Children are hit by a car standing too close to curbs, in their own driveways, or by not being seen because they are standing in the drivers blind spot.
3. Children are stolen when a car is stolen. They are strapped properly in the car seat but left alone long enough for the thief to steal the car but not notice the child in the back.
4. Children suffer heat stroke or hyperthermia when left in a closed car in the heat of the day. This can cause brain damage and lead to death.
5. Children suffer injuries to hands, fingers, or head and neck from power window accidents.
6. Children are injured when they set the car in motion when not supervised.
These are listed on the Kids and Cars website with more information and statistics. Check out the site for education and ways to help spread the word. We love our kids so we need to take the steps to protect them whenever possible. We are all human and accidents occur, but take a few minutes today to learn ways to keep those accidents at a minimum.
Kudos to Janette E Fennell who founded and is president of the organization. Let's all spread the word.
Happy Holiday and blessings to all.

Wednesday, May 21, 2008

Spinal Muscular Atrophy

When a family gets the diagnosis of spinal muscular atrophy, it can be a devastating moment. Sometimes parents are not aware of what to ask or where to find information.

We have had several patients newly diagnosed in our intensive care recently and I became aware of how little we all know about how to help these families cope. In my research I found three websites which I feel might be helpful to families in this new and stressful situation.

The National Institute of Neurological Disorders is a place to start to find initial medical information from a medical perspective. The website can be found at This site gives information not only on SMA but on other neurological diseases and their research.

Families of Spinal Muscular Atrophy has a non-profit organization and a website that gives tons of information and ideas for parents from a parent perspective. It has not only medical information, but information on coping, education of your child, dealing with loss, and new clinical trials and treatments. It can be reached by going to

Another organization with alot of information and support is FightSMA/Andrew's Buddies
It can be reached by going to

Check these websites for support information, research, and to read about how other families cope under similar conditions.

Sunday, May 18, 2008

Working From Home... Advice From a Guest Expert ...

PLEASE WELCOME MY GUEST KIM SPANGLER.....She is an author and stay at home mom who runs her own businesses. Today she offers some great suggestions for parents who need to stay at home caring for an ill child, but still need an income.
Visit Kim's blog and website often for more ideas about working from home. Give yourself permission to explore the new possibilities. Thanks, Kim for the good ideas.

Starting a Home-Based Business – A Potential Solution?

The responsibility of caring for a sick loved one can be overwhelming, to say the least, not just emotionally, but financially as well. Many caregivers are put in the position of having to choose between their family and employment. In this day and age, working from home or starting a home-based business may help alleviate this worry.

3 Quick Tips to Help You Get Started…

Put a Budget in Place. Know how much money you need to be bringing in each week/month, how much basic necessities are (keeping in mind rising fuel and food prices!) and how much available cash there is for business start-up costs and living expenses until your business takes off.

Research Your Market. Even if you are working in the field you want to launch your business in, research the market to determine the potential for success in an entrepreneurial capacity. If it’s a new market, research is even more important. How are your potential competitors doing? Is there room in your local market, or will you have to go global? Should you stick with conventional services, or should you specialize, or even expand on an idea or service? These are just some of the things to explore when doing market research.

Start Locally. The Internet is a remarkable tool, but when launching a home-based business, one of the best places to start is in your local community. In addition to cold-calling (typically not a favorite), look in the phone book, let word-of-mouth work for you (tell everyone what you do), and leave business cards around town. Your former employer may even be willing to be your first customer. It never hurts to ask!

Always over-deliver to your clients. Whether you are local, working face-to-face, or global, communicating online, remember you are typically not the only available game in town. As a home-based business owner, if you consistently deliver quality products and services at rates your clients consider to be reasonable, you’ll not provide them with reason to look for another source!

These tips offer a very rough outline to get you on the road towards freedom from the confines of an often inflexible 8am – 5pm (or whatever your schedule) job. Remember, before you take that first step, develop a plan of attack. A budget, an understanding of your target market, and idea of where you’d like to take your business are tools necessary for a successful home-based business!

Kim Spangler is a freelance home-working mom writer, specializing in parenting, women and mom topics. Visit her blog at to glimpse into her world of being a work from home mom, uncover tips about blending family and a successful home-based business, building a home-based business and to share the often unique experiences that only another mom immersed in the day-to day life could understand. Kim is currently working on her first book for work from home moms.

Thursday, May 15, 2008

Leukemia and Lymphomas in Children

One of the most common childhood cancers is Leukemia. There are several types of leukemia and lymphoma and a new diagnosis is at first devastating for the family members.
The Leukemia and Lymphoma Society is one of the first places for parents to get reliable information regarding what their physicians have just discussed. The site can be reached
at and is an excellent source of information. Here is a list of some of the topics they discuss:
New diagnosis
Financial support
Free materials
Myelodysplastic syndromes
Childhood Blood cancers
You can sign up for a free newsletter. They also have an information center with an 800 telephone number: 1-800-955-4572
This is one of the best sites and organizations I can recommend for families and children diagnosed with any childhood cancer. They do fundraising for research, sponsor clinical trials, and have successful recovery stories of encouragement on the site. Many childhood cancers are curable. Check out the site for the newest treatments and successes out there.

Wednesday, May 14, 2008

The Lecture..... A Book Review

The Lecture by Randy Pausch is a must read for the summer. Randy has a terminal diagnosis 0f pancreatic cancer. Rather than being depressed, he set out to leave a legacy for his children. The efforts have multiplied ten-fold. He is leaving a legacy for all of us.
The book is a warm, compassionate, and sometimes tearful account of what is important to the author and what he feels should be important to the reader.
Visit your local bookstore to read a sample of what Randy Pausch has to say or to get your copy. You won't be disappointed. He is a fine example of someone who is terminal and dying, yet is living his life with meaning. Read it today. It will change your life.

Sunday, May 11, 2008

Mother's Day Blessing's

Mother's Day is one of those holidays that teeters for some between being filled with happiness to bittersweet. All the flowers, cards and candy in the world cannot begin to describe the love a mother feels for her child. If you have your children close... I mean hug you, hear their voices, touch them close, God bless you. But for those mothers who have lost a child to illness, accident, war, or by some invisible line of separation, my heart goes out to you. Your heart must ache with an indescribable pain that cannot be explained nor one that others may understand. I feel for you.

Today is a new day. Choose to remember, to love, and to feel the joy of whatever experiences are in store for you today, whether sad or glad. Have the faith of a child and just be.

Friday, May 9, 2008

Acceptance..... You Don't Have to Like It, But........

The final stage in the process is acceptance. Don't confuse that with being pleased with the diagnosis and prognosis. Acceptance doesn't mean you like it, it just means you understand you cannot control it. And it means you want to move on and complete the things that you do have control over, like how you spend the rest of the time left.

Do you want to love, leave a legacy, write a memoir, get your papers in order, visit Disney World, fly a kite, roller skate for the first time? If it is the sudden death of a relationship or a loved one, you have less control about the legacy they leave but you can still make a difference for the good. The acceptance stage is where you make that positive decision to make life worthwhile.

I told you I would give you an example from my own career where I observed all stages in one afternoon. It was Mother's Day weekend several years ago when an 11 year old boy got hit by a car. In the emergency room his parents arrived in denial, saying things to each other like, " he'll be ok,"and "this can't be happening, he is strong, he will pull through."

Then came the anger. Dad slammed his fist into the wall when the doctor came out and said it didn't look good. He swore, he cried. He threatened to kill the driver of the other vehicle. Security had to be called. A half hour into the wait, the doctors came back into to see the parents and again, let them know it wasn't good. They were still working on the child trying to get his heart rate back.

Bargaining was next as dad told mom he would get that more expensive bike the patient had wanted as soon as he is better. He also promised to not work as much so he can spend more time at home to help his son recover. He promised.

The doctor came in and said all had been done and the boy was pronounced dead. The parents were told they could go in when they were ready. Depression followed for an hour demonstrated by tears, wails of anguish, and dad lying on the floor of the emergency room next to his son's cart.

As the emergency staff went back to taking care of the other patients, I stayed with the parents and other family members who trickled in to see the boy. Each time a visitor came, I had to assure them that all had been done that was possible, his head injury was severe, accidents like this were tragic, and it was in fact, no one's fault. Acceptance of the present situation came and could be recognized when parents were able to decide on a funeral home, take their son's belongings to the conference room, sign the release papers, and actually leave the hospital for home.

I am sure there were other episodes of depression during their grief, but they were able to go through the stages in what is called a healthy normal manner. They didn't attempt to hurt the driver or themselves. The parents recognized their need to be supportive of the other children. And they were able to lean on the other family and friends for support for now.

And when in a similar situation.... being able to function this minute is all you can do. Take it a moment at a time.

Thursday, May 8, 2008

Depression... The Fourth Stage of The Death and Dying Process

Depression is the fourth stage people experience when facing a terminal illness or loss of a relationship. It is that overwhelming feeling of loss and no sight of the light at the end of the tunnel kind of depression. It is painful, so painful it is sometimes impossible to cry or talk about it. It is a period of time where nothing matters... not eating, not dressing, not bathing....and it can last hours, days, or months. It inhibits one from moving on to the last stage, and for this time frame, it appears to others that all hope is gone.
Understanding this phase helps others to be patient, encouraging, and to take over tasks that the patient or child simply has no energy to do. Realize that the actual dying process can last months or years depending on the diagnosis, and the depression should not last for that same amount of time. Be there to listen and comfort during this period of sadness. Prepare meals or snacks and offer frequently. Seek the assistance of the health care team if the depression seems to last or if the patient goes without eating for a long period of time. Most importantly, give it time. The final stage of the process is just around the corner... and that is where the best is yet to come.

Monday, May 5, 2008

Bargaining, The Third Stage

The third stage in the death and dying process is bargaining. Here is when you try to make deals with "God". " I will do this if you will just heal my child" or " I promise to do anything, give up smoking, eat right, save all my money, give all of it away, whatever it takes to heal or save my loved one or myself."

Bargaining involves promises and wishes and unrealistic expectations. It occurs after you are angry but before you are ready to accept the entire diagnosis and prognosis of the situation.

Remembering this can occur with any significant loss, this is also when promises are made to save relationships for instance. The promises are usually made without validity and most often the outcome doesn't change. It is through the process that a person changes his or her mindset and learns to use other means to cope and accept the situation or illness.

Next up.... the fourth stage.

Blessings to all.

The Second Stage.... Anger

The second stage in the death and dying process is ANGER. And rightfully so. Life is not fair, bad things happen to good people, and all of the cliche's one hears when some tragedy occurs ring true. It is only natural to feel angry at the circumstances of a terminal diagnosis. It is when you can't get past the anger to the other stages that poses a unhealthy problem for your mental state.
So be patient if you know someone going through these stages, and be there to listen. Do not take words lashed out in anger to heart. The anger stage can last a few hours to a few days to a few months. At the end of this series I will give an example from my nursing to show how a family actually can go through all 5 stages in a few hours.
The most important thing to remember is not to get pulled into the anger yourself but to be there for the patient or family members experiencing the feelings. If you yourself are the one going through the stage, remember that to get the most quality from you life you must get through this stage.
Move past the anger to making every day count.. say the things to your family that show your love for them. Give them your dreams and wishes for them. Get right with God. Whatever it is that needs doing can not be done in the anger stage. Seek help from a pastor or physician if you don't seem to be getting over your anger. But deal with it because being angry doesn't change anything.
Next.... bargaining. Blessings to all.

Thursday, May 1, 2008

The First Stage of The Death and Dying Process

If your child looks healthy, if your pet seems fine, or if your relationship seemed ok, then when all of that falls apart, the first thing you do is deny the diagnosis. Denial is the first stage of the process a patient and family go through when a terminal diagnosis is made. Denial can also occur when a relationship begins to crumble, a traumatic injury has occurred, and when sudden death occurs unexpectedly.

Denial is the process of not acknowledging that the diagnosis has been made. Denial is acting as if everything is fine, when in reality, the patient is very ill. In the case of relationships, denial comes in the form of ignoring the present circumstances and acting as if there is not a problem.

During denial, family members usually have difficulty expressing the truth or often don't want to discuss things at all. It is important for others, especially the health care team to recognize this stage. In the initial stage of denial, it is not the best time to make health care and treatment decisions. Often, your doctor will give out the facts and let you mull them over for a week or two. It gives you an opportunity to get second opinions, further conclusive tests, and to get used to the ideas and terminology first discussed.

After a few days or weeks, and after treatment begins, the reality of the situation starts settling in. The patient and family pass through to the second stage of the process. Be patient with all involved. Each person goes through the stages at a different pace. An example, in the case of a child, a mom might move through the denial phase quicker than dad. Grandparents may not want to believe the facts at all. Or grandparents understand the terminal diagnosis while parents remain in denial longer.

As a health care team, we try to assist with families as they progress through the stages so that a healthy acceptance can be achieved long before the death takes place. This gives the family better quality time in the end. It doesn't lessen the sadness or pain, but gives them the time to say and do the things needed so they feel less guilty and have less regret if and when death occurs.
Things to do to help:
1. Always be honest without dampening hope...but try to remain realistic.
2 LISTEN , listen, listen....most often the family or patient needs to verbalize, they don't want or expect you to fix it.
3. Be available for errands, for phone calls, or to be the shoulder to cry on.
4. A prepared meal or doing household chores, lawn mowing, or any unexpected kindness shows the patient and family that you care.
5. Be patient.... remember everyone goes through the stages at their own pace.
Next.... the second stage .....Anger.