Tuesday, September 30, 2008

the Leukemia and Lymphoma newsletter......

The month of September was Leukemia and Lymphoma awareness month. There is so much research and new treatment modalities available that I can't possibly list it all here but you can check out the leukemia website for some great information. They have a newsletter you can receive monthly right to your email box. Blood cancers of all types are a challenge but don't have to be a death sentence. Check out the newsletter for positive information and hope.
Spread the word to others for a reliable source of good information. Whether you are newly diagnosed or you know someone who is, this website leads to other resources and can provide answers to the questions you have and may be afraid to ask.
The site gives positive results and clinical trial information, fundraising opportunities, and what research is going on today. Check it out.

Friday, September 26, 2008

Happy Kids.....

In the midst of a health crisis and the worry of diagnosis and treatment plans it is important for parents to keep in mind that kids just want to be happy. That means the child who is ill and going through the diagnosis and treatment of a serious illness and the siblings at home.

How can parents keep happiness as a priority?
  1. Find something to laugh about even in the midst of the crisis. Humor goes along way to easing tension and fear.
  2. Express love frequently and reassurance often. Children need to know that an illness is no fault of their own and that no one is angry at them for being ill. They also need to know that just because they are ill it is not a free ride to being rude, thoughtless, or irresponsible. This is particularly important for teens to understand.
  3. Simple rewards are a fun way to treat both the child who is ill and the siblings for a rough day or an unpleasant treatment. Movies, game nights, or any little special reward help to restore happiness and hope after a stressful experience and can keep tension down and family time a priority.
  4. Keep to family traditions or start new ones to keep everyone in the family connected during those times when you feel disconnected due to the current crisis. Bedtime stories, phone calls, or special meals give everyone in the family something to look forward to when treatments seem overwhelming.
  5. Leave happy notes in book bags or lunch boxes. Siblings can write notes to each other, parents can write notes to kids, husbands can leave notes for wives, pets can leave secret notes to kids leaving a trail of encouragement and affection for the recipients.

Happiness can be found in the middle of a crisis when you keep love at the center of what ever you are dealing with. It is important to show children how to find this kind of happiness and to teach them the skills to deal with the rougher side of life. I have learned these skills myself from my parents and grandparents and it is a joy to pass them on to my own children.

As my grandmother always used to say, "No matter what, keep laughing"

Tuesday, September 23, 2008

Young High School Student with Cancer Writes and Publishes a Book.....

Here is a story you have to read. This young high school student named Stephen Beirne has been diagnosed with a malignant tumor at the base of his skull and into his spinal cord called a Chordoma. He is going through chemotherapy treatments and surgical treatments and guess what he has done during this treatment.......

He has written a book. He doesn't feel sorry for himself, he writes. And he donates the proceeds to Make-A-Wish- Foundation.

Now, I say that is fantastic. What a role model for other teens. His book is a fantasy where the main character, Eamon, risks his life and the lives of his friends in search of a treasure.

This book sounds pretty exciting to me. You can get your own copy by calling The Learned Owl bookstore at 1-800-968-2685 to give your credit card information.

You may also email the bookstore if you have questions at books@learnedowl.com

Get your copy soon and let me know what you think. Remember the proceeds from the book go to Make-A-Wish-Foundation and that is a great cause.

Sunday, September 21, 2008

Helping Children with Grief........

  • It is so important to remember that children feel grief and pain at a very young age, even when we go to great lengths to protect them from it. And they will express it in ways we may not understand at the time, but we need to acknowledge.

I can see it in siblings dealing with these emotions in our intensive care and I see it in my own grandchildren.

My five year old granddaughter is sensitive or dramatic to these feelings depending on her mood. She may turn on the water works like when her barn kitten was fatally injured, ( one was hit by a car not too long ago and she can still cry buckets over it) or she may be totally mature and matter of fact, ( like when she explained about the skunk hit on that same road. Here she simply stated the obvious fact that she would be very glad when the skunk was all the way flat because then he wouldn't let off that stinky puff every time a car ran over him.) And she was quick to reassure me that I should not be sad because my daddy,her great papaw, was with Jesus so I shouldn't cry.

My grandson who is two can also show his grief as he did this week when my dad passed away. He spent several minutes throwing himself to the floor playing "dead" to show my granddaughter what it was like when papaw died.

Follow these tips to help your child to feel free to express their grief:

  1. Allow your child to talk about death in his own words without judging
  2. Use age appropriate honesty to explain the event or to discuss family/religious beliefs
  3. Answer questions as simply and truthfully as possible without overwhelming the child
  4. Find ways to honour the memory of the loved one or beloved pet to help your child remember
  5. Weave joy and laughter with the tears ... it will reassure your child and tame their imagination about what they don't understand.

Following these tips will help to ease your child's fear about death and to reassure your child that there is still love and happiness in the midst of sadness and grief. And give hugs, really big hugs.

Tuesday, September 16, 2008

The Victory .....not the defeat.

I have been away from the blog for a few days because our beloved dad passed away suddenly last Friday. He was blessed to go peacefully in his sleep with the love of his life, our mom, by his side.

I have experienced the loss of my grandparents, my father in law, and my niece, but I have never experienced a loss so deep as the loss of my dad. He was a man of integrity, of love, of kindness, and of faith. He was our role model of what a loving husband, father, and grandfather should be. And he loved each of us unconditionally, as Christ loves his Church.

It is because of that faith that I can say to you here that I also have not experienced as much joy as the absolute joy of knowing that my dad is in heaven. I pray that each and every reader who is going through this kind of grief and loss will experience the same joy of which I speak.

Victory in death and heaven is the prize. May all of you share your love and your faith with others so death will not defeat us, heaven will greet us, and each of us will have everlasting life.

Peace and blessings to all. Hope to those who need it. And joy in everything, always joy.

And that is what my dad has taught me.

Tuesday, September 9, 2008

Taking it all for granted.......

It is amazing that nurses untangle the mess of wires, cords, and monitors to make any sense of what each item represents. Yet nurses don't even look at the wires as a mess, they just untangle them and move on and never explain any of it to the parents.

I am in the process of writing a " day in the life" kind of manuscript for a publisher and in the process I am discovering how much I take for granted and how much the reader ( lay person, parent, family member, ) might not understand, and how frightening it might appear.

I also must take photos for this book. At first I could not for the life of me figure out what anyone would want to see that they haven't seen before. And then it occurred to me, that not everyone has had a child critically ill, thank God, and maybe they have never seen inside an ICU.

So, now I am on a mission to be more detailed in any explanation that I give to parents who have never had this experience. I will try to be more exact when I address certain issues here as well, because for most readers this may be the first or second place they have read about it.

With all of this in mind, please email me if there is a subject you would like more information on. You can also list it in the comment section. For starters, I think I will start with basic medical terms regarding laboratory testing that most parents will come in contact with at some point, even with healthy children.

Look for information on the complete blood count coming soon. More detailed information will be compiled into a handy ebook for parents when I have the best information put together. Watch for that information as well.

Sunday, September 7, 2008

Book Review- When Someone You Love Has Cancer

Here is another book in the Elf Help series that parents may find helpful.
When Someone You Love Has Cancer- A Guide to Help Kids Cope is an excellent place to start when explaining things to kids.
Things like Is Cancer Contagious....and other questions kids have but that parents may not know exactly how to answer.
Author Alaric Lewis gives kids and their parents the answers and Illustrator R.W. Alley enhances the text with the adorable elf characters he has done in other Elf Help books for kids.
The book was released in September of 2005 and is one of the best ways to approach the subject of cancer with your child. The book can be found in the library, at www.Amazon.com, or at your local book store.
I know you and your child will be able to talk about your loved one and this disease with more understanding after reading this text together. Let me know what you think.

Tuesday, September 2, 2008

A Family Retreat When a Child is Seriously Ill ......

I want to tell you about a retreat in Danbury, Wisconsin that is for parents who have a seriously ill child or who have lost a child and need a place to heal.

This retreat is in a quiet and serene area surrounded by tall pines and rolling hills, where parents can visit with other parents who have gone through the same grief or are dealing with the trials of having a serious illness in their family. There are activities, week end stays, private areas, and a host of other amenities to help families regroup and begin to heal.

Faiths lodge has served 155 families since it opened in July of 2007. They have served 55 bereaved parents/couples and served 50 families of seriously ill children. The Today show featured Faith's Lodge on July 24th of this year and a segment of that recording can be viewed on the Lodge website at www.faithslodge.org/news

The Lodge relies on word of mouth and volunteers to assist with the programs. More information can be found on their website at http://www.faithslodge.org/ or by contacting:

Faith’s Lodge

Attn: Kristi Luenzmann, Program Director 6942 County Road C Danbury, WI 54830

This lodge serves the Midwest and guests have traveled from MN, WI, ND, SD, IL, MO, KY, OH, GA, and CA. Check out the website for a virtual tour and see what the lodge has to offer. You can download an application from the website if you know a family who is grieving and could benefit from such a retreat.

And you can also find what volunteer opportunities are available and how you can donate both time or money to such a worthy cause.

Monday, September 1, 2008

Purple Songs Can Fly....

I just read a great article about a well known pianist and singer from Texas who has made a difference in the lives of children with cancer. The article was in Family Circle July 2008 and some of you may have read it.

I went a step further and visited the website, http://www.purplesongscanfly.org/ Here is a wonderful example of what one person can do when they set their minds to it.

Children with cancer have so much on their minds and hearts while going through treatments. Anita Kruse is helping children with cancer express themselves in music. What a wonderful idea. Wouldn't it be grand if we had a music program like this one in every children's hospital in every state.

Not only do these kids get to make music and write lyrics, they can record their songs on CD's and some of them are played in airplanes for passengers. One of the CD's went on the shuttle, Discovery with astronaut Scott Parazynski. Now that is pretty cool.

Check out these photos from the website and visit http://www.purplesongscanfly.org/ for more information.

Then follow your own heart and see if you can make a difference in the lives of children in some small way.