Coping Methods

People tell me all the time how well I cope with Emma's sickness.  I understand their comments, and their well-meaning.  But...I don't really like to be told how "well" I'm doing.  Sometimes I don't feel like I'm doing well at all.  Sometimes I feel like I'm falling apart!

So I decided to figure out why I come off as "coping".  I examined everything I do, and I realized that one thing that helps me work through things the most is (duh) my writing.  I am a writer.  I express myself best in the written word.  I get my negative feelings out, and then I feel better to face the world.

I don't journal, but when I'm feeling particularly strong about something I will write it down.  And then, I'm always writing other things (articles or stories, etc.).  Writing is my coping mechanism!

I think everyone needs a healthy way to cope, because while we don't all have kids with cancer, we do all have stress (especially during the holiday season!).  For some it's crafts, or exercise, or singing, or dance, or reading.  What's your coping mechanism?  If you don't have one, you should find one.  After all, if it works for me, it can work for you, too!

I Am Strong

Here are the beautiful lyrics to a song by Dolly Parton and the Grascals, which was written for the kids at St. Jude, and filmed with them.  Of course, it is dedicated to kids with cancer everywhere!

I am tired and I am weak

Sometimes I ask, "Why me?"

But I have faith and I believe

That I am strong

I have a Mom and I have a Dad

I am happy sometimes sad

And I have hope and I have GOD

And I am strong

I am strong, I am strong,

Take my hand, sing my song, I am strong

I am a child and I have dreams

That I’ll fight for you to see

Know in your heart when you see me

That I am strong

I wear a mask… I have no hair

I may be sick I may be scared

But I know God He answers prayer

And I am strong.

I am strong, I am strong

Take my hand sing my song, I am strong

I am strong, I am strong

Take my hand, sing my song, I am strong

Take my hand, sing my song, I am strong.

Guardian Angels

     I recently read a book called Heaven Is For Real.  It is about a little boy who says he went to Heaven while on the operating table when he was three years old.  It was a thought-provoking story, one that often left me smiling, or crying, or at the very least, hoping. 

Did I believe it 100%?  No, not really.  But who cares?  It was a nice thought.

What does that have to do with anything?  I’ll tell you J

We have often wondered where Emma “was” while she was in a coma for 2 ½ weeks.  I can tell you that when she woke up she had a couple of odd things to say!  Do I think she went to Heaven?  Doubtful.  However, I don’t think she was alone in her sleep.

Now, before you call me kooky and click away, hear me out!

In Matthew 18:10 it says, “ Take heed that ye despise not one of these little ones;  for I say unto you, That in heaven their [the children’s] angels do always behold the face of my Father which is in heaven.”

Children have guardian angels.  When I read this verse sweet relief filled my body, and I smiled. 

Think for a moment how you would feel if your child was in a coma, all alone, on the brink of death for 2 ½ weeks.  I couldn’t stand the thought that she was alone in the recesses of her sub conscience.

But she wasn’t!  She had a guardian angel who was with her, and who was going before God the Father on her behalf.  See why this discovery should make me happy?

So after reading this, I asked Emma if she knew she had a guardian angel.  She looked up from her toys, shrugged, and said, “Yeah.”  Like, duh Mom.

In light of reading the Heaven Is For Real book, I kind of paused.  I said, “How did you know?”

She said, “Because I hear them…

Time out.  She started this sentence, and I’m thinking—she HEARS them?!  But then she finished.

…bowling every time it storms.”

Ha!  I smiled and said, “Oh, that’s right.”

So maybe Emma hasn’t ever ‘met’ her guardian angel, but I believe with all my heart that he is with her.  And that makes me happy.

Anyway, I thought this was a fitting Christmastime subject!  Happy Holidays!

There's A Monkey In My Chair!

Yikes!  Have you ever seen a monkey in your chair?  Emma has one in hers, but he only makes an apperance in her kindergarten class, and only when Emma can't go to school because of chemo and doctor's visits!

This month's charity highlight is a really cool project, and one that brings smiles to young kids with cancer everywhere.

WHO ARE THEY?  www.monkeyinmychair.org  They are a beneficial program dedicated to helping kids with cancer feel connected to their classmates and friends, even when they're away.

HOW THEY STARTED:  There's a Monkey in my Chair was originally started by a little girl named Chloe, and her mother.  Chloe had to spend lots of time away from school for cancer treatment.  From the Our Hero website: Chloe was fun-loving, free spirited girly girl. She loved dancing, singing, everything pink and everything monkeys! Chloe is the inspiration behind the program, There's a Monkey in my Chair, which helps children battling cancer with their absence from the classroom.

HOW YOU CAN HELP: Go to their website to donate today.  You can sponsor a "kit" which will be sent to a deserving child.  You will brighten their day!  How cool is that?

Life Lessons 101 with Teacher Katie

Life teaches us many lessons--we all know this.  Today I'm thinking about unwanted advice, and how to deal with it.  We've all had unwanted advice.  There's the pregnant woman who hears advice on everything from stretch mark miracle creams to natural labor, or the young mother who gets stopped at the grocery story by 47 elderly ladies, who each have something to tell her that she's doing wrong (bundle that baby up!  don't give her a pacifier!  you should be feeding him more!).

I get unwanted advice as the parent of a child who has cancer, too.  Well-meaning people tell me how to better treat Emma's cancer; all-natural diets, cut out dairy, think positive (that one is particularly amusing), get more exercise.  The list goes on.

I haven't ever (okay, not often anyway) gotten upset over the unwanted advice.  I usually just smile and nod, saying something like "that does sound like good advice", because really, when is 'get more exercise' not good advice? 

So today's life lesson is to laugh off well-meaning but annoying people.  That wasn't a very nice thing to say, was it?  However, I figured this was something that everyone goes through; we don't have to get angry or bitter at those people who are trying (albeit unsuccessfully) to help us with our lives.  They do mean well.  So laugh it off with me, and maybe, just maybe, give some thought to what they say.  You never know...they might have a point.

Thanks and Giving

This season is St. Jude Children’s Research Hospital’s Thanks and Giving campaign.  We are urged to give thanks for the healthy kids in our life, and give to those who are not.  I have a confession to make.  I despise this quote, and those commercials.  I felt this way long before Emma got sick, actually.

Six months before Emma was diagnosed, some friends’ little boy was diagnosed with cancer.  This was right at Thanksgiving time—right when St. Jude was airing these commercials.  EVERYTIME one came on the TV I would start sobbing.  Literally.  I would immediately start praying profusely, thanking God that Emma was healthy.  I would say something like, “Thank you, God.  Thank you, God.  Thank you, God.  Please keep her healthy.  Please God.”

I would usually finish the prayer with words for my friends’ son.  I spent hours upon hours praying for them.  And I begged God to never let “that” happen to me. 

I believe that God was preparing me.  We know from the Bible that God doesn’t give us more than we can handle (that’s not to say that any of us particularly like to hear this quote).  However, getting thrown into the arena without any warning would be much worse than getting a little introduction to the subject beforehand. 

God was letting me recognize what I would come to think of as my greatest fear, so that I could learn to not fear.  He had mercy on me, and said, “While you think this is the one thing in life that you couldn’t handle, I’m going to show you that with My help, you CAN handle it.  With My help you can do anything.”

Today I dislike these commercials because I don’t like being on the receiving end of those “gifts” that St. Jude is asking for. I would much rather be the one doing the giving. Have you heard the Bible verse, “It is more blessed to give than to receive”? Well, I can attest that it is true. And yet, how can I not be thankful for the gifts? The people supporting St. Jude saved my daughter’s life.

So all of that is a round-about way of saying I’m thankful for St. Jude, even their tear jerking commercials, and especially their wonderful, fabulous, kind-hearted, caring, loving donors.  If you have ever donated to St. Jude, I am personally telling you thank you today.

Here’s the rest of my Thanksgiving "What I'm Thankful For" list:

1.      God's mercy.  Without God’s love I would be on my way to hell.  Not because I’m a “bad” person.  Not because I haven’t done enough good to make it to heaven.  Just because Heaven is perfect, and I am not.  God loves me anyway, and sent a way for me to get there—Jesus.

2.       My husband and children.  I have the best husband in the whole wide world.  He is an amazing father, provider (he works himself to the bone sometimes!), and husband.  And my girls?  What can I say about them?  Emma shouldn’t be here, so I am magnanimously thankful for her.  Ashlyn is a spit-fire who never ceases to make us die laughing as she points her finger at us and gives us a piece of her mind in jibber-jabber.

3.      My church.  I love the people in my church, and I wouldn’t trade a single one out for someone else.  Are any of them perfect?  No.  Do we sometimes split hairs and disagree?  Uh, yeah.  But when I needed someone to pound on the gates of Heaven with prayers for my daughter, they stepped up to the plate.

4.    The rest of my family!

5.    Pumpkin Pie. Yum.

6.    Books.  I could crawl up in a hole and read for the rest of forever.

This post turned out much longer than I intended!  Thanks for reading, and have a Happy Thanksgiving!

P.S.  The family I mentioned above is still fighting a raging battle.  Please visit their website, and pray for them www.prayfornoah.com

Who Do You Trust?

When Emma was 1 year old, one of my husband's cousins (who was 5) passed away.  She had cancer.

Shortly after this I was taking a class for work on germs/illnesses/cleanliness.  A statement was made that statistics showed that children who attended daycare had a much better chance at never getting cancer because they had built up such a strong immune system.

Whew!  I felt this huge relief!  After the pain my husband's family was going through, here was this tiny sliver of assurance that this wouldn't happen to me, because I worked at a daycare, and my daughter had come with me everyday since she was 9 weeks old.

Statistics?  I laugh in the face of statistics!  Ha!  Ha!  Ha!

Okay, as sad as that all is, the experience taught me a vital lesson.  You can't put your hope and trust in anything or anyone other than God.  Psalm 121:1&2 says "I will lift up mine eyes unto the hills, from whence cometh my help.  My help cometh from the Lord, which made heaven and earth."

So what are you putting your hope in?  Do you take peace from reassuring statistics?  Do you hold on tight and hope things go your way? 

I've learned that even in the face of pediatric cancer things can go well.  Do I like cancer?  No.  Would I give it back in a heartbeat?  You betcha!  But I have felt God's hand on us so often, and I have a peace now that I never knew before--a peace that tells me everything will be okay, no matter what happens.

I wish for you all to find that peace (though maybe not in the same way I found mine!).  And in case it isn't clear, I mean a peace in God.

Ronald McDonald House Charities

This month's charity highlight goes to...The Ronald McDonald House Charities!  This is one of Emma's favorite places ever.  Whenever we go to Memphis, she hope hope hopes that they will tell us that we have to stay there.  And let me just say, they are a wonderful group of people.  We are given a comfortable, spacious room.  We have a huge pantry of food at our disposal.  There are playrooms, craft rooms, game rooms, movie closests, playgrounds, bikes, scooters, fitness rooms, a chapel and more.  When you donate to this charity, you are HELPING THE FAMILIES who stay there.  Families who are going through hell, much of the time.  So here they are!

WHO: Ronald McDonald House



MISSION:  The mission of Ronald McDonald House Charities (RMHC) is to create, find and support programs that directly improve the health and well being of children. Guiding us in our mission are our core values:

• Focusing on the critical needs of children.

• Celebrating the diversity of the programs we offer and the staff, volunteers and donors who make them possible.

• Staying true to our heritage of more than 36 years of responsible stewardship.

• Operating with accountability and transparency.

THEIR STORY:   The first Ronald McDonald House opened in Philadelphia thanks to Dr. Audrey Evans, Philadelphia Eagles’ player Fred Hill (whose daughter, Kim, had leukemia), Leonard Tose, owner of the Eagles, Jim Murray, the Eagles’ general manager and Ed Rensi, the McDonald’s regional manager.
     The McDonald’s owner/operators in Philadelphia made the House possible, donating proceeds from the sale of Shamrock Shakes.


HOW TO DONATE:  You can always drop a few bucks (or coins, it all helps) into the little boxes at McDonalds.  You can also donate by visiting here.  But it gets better than that!  Each individual House has their own website, so if you want to donate to a specific location you can do that, too!  Our favorite is, of course, the RMH of Memphis, but you can search the home website for your local chapter.  There are other ways to help as well.  You can collect pop can tabs, which they will recycle and the proceeds go to RMHC.  You can also volunteer at one of the houses, or donate supplies (each house has a "wish list").

Patient of the Month

I am a very proud mama today because Emma is St. Jude's official patient of the month for November!  If you haven't seen her story/video yet, please visit www.stjude.org and scroll to the bottom right corner.  There you will see Emma's picture, and a link that says "Meet Emma". 

Watching the video and reading her story made me cry.  I really can't help it.  The day of the interview we spent the morning at the Memphis Zoo with the camera crew.  It was such fun!

I am so proud to be a part of the St. Jude family, and as I say in the video I don't believe Emma would be alive today if she had been sent to another hospital.  NO ONE else would have been able to get her diagnosed and on chemo in less than 24 hours, which  was vital to her survival.  It is because of my thankfulness to St. Jude that I was thrilled to help their cause in participating in the patient of the month interview. 

Because of the huge debt of gratitude that our family owes St. Jude, I am proud to support them in other ways as well.  That is why we are participating in the national Give Thanks.  Walk.  This walk will be held across the nation on November 19th.  We are taking donations to support our walk this year, and I hope you will donate to this very worthy cause.  You can see our fundraising page at http://www.mygivethankswalk.org/emmaclark

I am so proud of my little girl, and I can't help but ramble a little today about it.  Thanks for bumbling along with me!

A Yucky Little Monster

I wrote this poem two days after Emma was taken to Memphis.  Some of you may have read it before, but it is something that I hold dear, so I thought I would share it here!

A YUCKY LITTLE MONSTER
By: Katie Clark, for Emma Clark
In Honor of Dr. Scott Howard

A yucky little monster went floating through the air
I swallowed him by accident, quite unaware.

I didn’t see him in there, he’s a sneaky little guy,
Hiding every time I laughed and every time I cried.

Then that yucky little monster went and did what he does best.
He grew and grew and grew, getting bigger in my chest.

He made me really sick, he took away my fun,
But I will have the last laugh when the day is done!

You see, I met a superhero who knows just what to do.
Fighting little monsters is his favorite thing to do.

So we will fight the monster, and one day we will win.
Good bye little monster.  Don’t come back again!

Time

Time is a tricky thing.  We always think it will be there for us, but in truth, time waits for no man.

I thought I had time with Emma.  I haven't said this too often, but before Emma was diagnosed, I KNEW something was wrong with her.  Even when her doctor said it wasn't anything serious, I mean it when I say I literally KNEW that it was.  I just figured I had time, I would bring her back again and again until we got our answers.

But I didn't have time.  Cancer wasn't waiting for me to get my ducks in a row.  Her tumor didn't slow its growth until I was ready to deal with it.

I learned my lesson there, so today when we get the opportunity to do something fun with our kids, we take it.  When we get the opportunity to serve, we do it.  That opportunity might not be there tomorrow, or truthfully, we might not be here tomorrow to take it. 

I don't want any regrets...at least not where time is concerned.

What about you?  Has something happened in your life to show you that time is one of your greatest assets?

Time Is  by Henry Van Dyke

Time is
Too Slow for those who Wait,
Too Swift for those who Fear,
Too Long for those who Grieve,
Too Short for those who Rejoice;
But for those who Love,
Time is not.

We're Home!

Wow.  That is the best word that I can think of to describe our trip to "The Lighthouse".  This group of loving, caring people pampered us, catered to us, prayed with us, and played with us.  We had (in Emma's words) "the best time ever"!

Each day began at 8am with breakfast, then moved on to "Morning Watch", a daily devotion time.  After that, the kids split up into groups and the parents had a type of group therapy.  We were actually kind of leery of this part.  We didn't want to sit with a group of strangers and talk about our feelings.  Guess what?  That turned out to be our favorite part!  Being with these brave and strong parents, who were fighting the same montsters as us, helped us so much.  It was enlightening, and we found new strength and wisdom.

My favorite thing that was said was from one of the dads.  He said that we are the lucky ones.  Most parents, he said, have to teach their kids about their math homework, or their spelling homework, and they complain about that.

We get to teach our kids about LIVING!  We are showing them how to fight, how to be strong, how to cope and move on, how to be happy in spite of the bad.  We are the lucky ones.  I loved this!

Another parent said that she feels like her life is too big.  I definitely feel like that sometimes, too.  How can I handle all of these big things?  But knowing that I am not alone in this helps more than I can say.

After this we had lunch each day, and then free time (which we spent at the beach!).  In the evening we had supper, and then some type of group activity.  On the last night there was a talent show.  Emma and Ashlyn were sooooo cute!

Overall the trip was a success, and we definitely plan on attending next year.  Thank you for sharing it with us!

Lighthouse Family Retreats

Soon we will be heading to a beach in Florida for a cancer family retreat, hosted by Lighthouse Family Retreats.  We have heard great things from other families who have attended  these retreats, and we are hoping to bring back some awesome reports ourselves!  So here is this month's charity highlight.

Who: Lighthouse Family Retreats

Mission: to serve families living through childhood cancer by helping them to laugh, restore family relationships and find hope in God.

What They Do: Lighthouse Family Retreat hosts beach retreats for families affected by childhood cancer.  They endeavor to provide some momentary normalcy in the midst of the chaos. Kids just being kids: playing in the sand; laughing in the sun; and enjoy a vacation as if maybe for just a week cancer has all but disappeared.

Refer A Family: Know a family facing pediatric cancer?  Part of a family facing pediatric cancer?  You can apply for a retreat here . 

Donate: All of the retreats are run by volunteers, and on donated money.  If you would like to help further Lighthouse's mission, you can learn more about volunteering or donating here .

We will be back next week...hopefully with pictures!

My First Blog Award!

Last week I was thrilled to receive not one, but two blog awards! 

 

The rules of accepting these blog awards are simple:

By accepting the awards, I agree to:

1. Thank and link to the person who nominated me.

2. Share seven random facts about myself.

3. Pass the award on to 5 blogger friends.

4. Contact and congratulate the nominated blogs.

I'd like to thank Claudine, of Carry Us Off Books.  If you have small children (or if you just love books for small children, 'cause I do) you must check out her site!

Seven random facts?  Hmm...

1. I love Spaghettios with meat balls.  Gross, I know.

2. It takes a lot, lot, LOT to make me upset.  So if you ever see me upset (and this could mean mad, sad, grumpy, or irritated), you know that something, somewhere, went terribly wrong!

3. I'm a little addicted to the internet.  Not a lot...but a little.

4. I am the middle child of 5.  Do I have the middle child syndrome?  You tell me!

5. I don't like sappy romance.  Give me some adventure, or action, or ANYTHING other than sappy romance.

6. I love being a part of the St. Jude family (not that I'd chose to be a part of any hospital family, I'm just saying).  Some people ask me/tell me about how daunting going to Memphis is.  I don't feel that it's daunting at all.  I love St. Jude. (now, it was a bit daunting when we had to go every 2 weeks, I admit!)

7. Last but not least...I prefer going to bed really early and getting up really early.  I could NEVER sleep until 10 or 11 o'clock, let alone noon!

So now to pass these awards on...

Stories For Children Blog  by Alice

Grumpy Grovers by Theresa Grump

Poetic Bloomings by Marie and Walt

Haas Blaag by David Haas

Miranda Paul Books by Miranda Paul


So there they are, my first ever blog awards.  It's all in fun, and doesn't everyone need a little fun now and then?  I hope to be enjoying a lot of fun soon, as we travel to the beach for a cancer family retreat with Lighthouse Family Retreats (more on that next week!).

Thanks for visiting!

Accepting the Unacceptable

No, I can't say I am anywhere near "acceptance" of Emma's diagnosis.  Just last night I lay in bed crying because all of the sudden, this thought entered my mind--my five year old daughter has cancer.  Gulp!  What?  How did this happen?  I birthed her, and she was perfectly healthy!  My little girl does NOT have cancer!  She is not undergoing chemotherapy.  She is not a patient of St. Jude Children's Research Hospital.  She is fine, fine, fine.

However, I don't always feel this way.  Sometimes I feel like I HAVE fully accepted this new life.  Sometimes I feel okay with it, but sometimes I feel sad, or angry.  And then there are the times of denial, like right now.

If there is something I have come to realize about the emotions this journey evokes, it is that we don't EVER master our emotions.  Just as I think I finally have the anger licked, it rears its ugly head.  Just as I think I am okay with it all, I get all depressed. 

I have noticed a few things, too, about the TIMING of these emotions.  1. If I am really busy, the bad emotions come more easily. 2. If I slack off on my devotion time each morning, the bad emotions come more easily.  So I have made a determination to keep a bit more organized, so that I don't get overwhelmed with a busy life, or let my quiet time slack off.  Writing helps, too.  I can express my feelings oh so much better in writing than if I were to talk to each of you face to face.

I think it is probably this way for everyone--not just cancer families.  Life is a roller coaster ride--with fun parts and scary parts.  So when your own ride takes a scary dip, how do you deal with it?

Become A Volunteer

Ever since Emma was diagnosed, and we spent lots of time in the hospital, I have witnessed first hand the gentle and quiet care of volunteers.  I have seen the very young to the very old; male and female, all very happily giving their time to help those who are hurting.

During the last year and three months I have had a growing desire to do more, give more, be more.  This desire grew drastically when we went to Disney World.  We stayed at the Give Kids The World Village, which is run almost entirely by volunteers.  Not only that, but the entire Village was literally built with donated money.  Not one loan was taken out to build it where the money wasn't already promised to pay the loan off.

I learned that there are around 1500 volunteers a week at the Village.  We saw small children with their parents volulnteering.  We saw retirees.  We saw teenagers.  We saw entire staffs from corporations working for free to maintain the village.

My whole life I have worked on ministries through my church, but it is usually (I admit) with a tiny huff that I have to go give up a few hours of MY time.  I am commiting here and now: I don't want to be this way anymore!

I have now been at the receiving end of the help these loving folks offer, be it on vacation or at the hospital when someone pops in late at night to ask if I'd like coffee or hot chocolate.  I realize just how much it means when someone cares about me when I am hurting.  When I am going through a tough time.  When I NEED.  Through receiving, I have realized just how blessed it is to be able to be the one doing the giving.

So I want to do my work through the church a little more enthusiastically now.  And not only that, I want to increase my volunteer work.  Perhaps not much right now, since there are weeks when I am confined to my house, but a little at a time.  I also want to teach my kids the spirit of volunteering.  I told Emma the story of the man who created Give Kids The World (I bought his autobiography Gift Of Life, and it is amazing).  She was enthralled!  She said, "Hey Mom?  Do you think I can do something like that one day?  I want to help other kids who are afraid."  My heart melted.  I promised her that she could do that, and I would help her.

In light of this, I have made a list of areas that I (and you) could offer a little help to those who need it. 

1. Church work.  So often I see (and yes, I'm going to say it) church members who begrudginly do their ministries at the church.  I have been one of them.  But there are classrooms that could be cleaned, kids that could be taught, supplies that could be purchased.  Volunteer to be the person who fills these needs.

2.  Hospital work.  There are volunteers at the hospitals who bring around hospital toys to the kids so they won't be bored in their rooms.  They offer magazines or books to the parents.  Some do play groups with the kids.  You could also donate supplies.  Playdough, DVD's, books, crayons and coloring books.  Really, the list goes on.  When Emma stayed in the Huntsville Hospital a few weeks ago the movie selection was seriously lacking ; )

3. Donations.  This could be money or supplies, to any orginization you feel worthy.  Church, a charity, the hospital, or your local soup kitchen or clothes closet.  Whether you can offer $5 or $1000, trust me you gift will be appreciated!  Never think that what you have to offer is too little.  It isn't.  Obviously, my favorite charities from now til forever will be St. Jude, and now Give Kids The World (can you tell I liked it there?).  But maybe you have a heart for the March of Dimes, or something else.  And of course, your local church is a must.  See what you can do--AND DO IT!

This is a small list, and there are many more areas where help is needed.  You could drive people to their doctors appointments if they don't have cars.  You could take a meal to a grieving family.  You could volunteer at a homeless shelter.  Pick up people and bring them to church (you might be surprised at how many people would come to church if they only had a ride).  My charity doesn't have to be your charity.  Find something that YOU can do.

I have been reminded time and again lately that we weren't put here to "eat, drink, and be merry".  I don't want to live so selfishly anymore that I won't give up any of my time or money because I need it for ME.  Will you join me?

Guest Blogger David Haas!

Pediatric Cancer and Fitness

There is little more devastating than diagnosing a child with cancer. Though treatments have come a long way toward raising survival rates and quality of life, the survivors will have to deal with problems created by both the cancer and the treatments for the rest of their lives. Chemotherapy can cause damage to the heart and other vital organs, while radiation can damage the glands. Research has begun focusing on ways to help children overcome this damage, both minimizing the effects during treatment and making full recoveries after the fact.

Fitness is increasingly viewed by the world's top oncologists as an effective and complementary form of treatment and recovery. As treatment facilities catch on to the power of fitness therapy, there is a growing need for licensed trainers specializing in developing fitness routines for cancer patients in every stage of treatment and recovery. For now, it may be best to find a personal trainer willing to do the research and consult with the treating physician in developing a routine. The extra effort is definitely worth it.

How will Fitness Training be Helpful for Children with Cancer?

There are several risk factors that help predict who has a greater chance of receiving a diagnosis of cancer. Two leading risk factors are previous diagnosis and a sedentary lifestyle. A study funded by the National Cancer Institute showed that this double-edged sword is applicable to the survivors of childhood cancer. Not only do these survivors face a greater risk of cancer in the future, they are also at much higher risk compared to the general population for heart disease, diabetes and obesity.

Beginning fitness training during cancer treatment may seem like a bad idea, but a growing number of oncologists are recognizing the need to develop fitness programs that work as part of the treatment team. Until these programs are in place and tailored for children, it is up to care-givers to find the right personal trainer and consult with physicians to implement a program.

Motivation is an important tool, especially for those diagnosed with mesothelioma and other low-survival cancers. Since motivational strategies vary widely, it is a good idea to seek the advice of an education specialist. The benefits of physical activity during and after treatment are real, and any effort put into establishing a routine early will contribute to the long-term survival and quality of life for the child.

By: David Haas Writer of the Haas Blaag

Go For The Gold!

September is Childhood Cancer Awareness Month.  A gold ribbon represents the month, so go for the gold and support childhood cancer research!  Pediatric cancer has only a fraction of the research going on that adult cancers have.  We need to find a cure or a prevention to keep this monster from attacking the kids in the future. 

Today at our clinic visit a wonderful little girl made me a gold-bead bracelet to wear throughout September.  It is beautiful!  I plan to wear it every single day.

So how can you help?  Well, I'm glad you asked!  Chili's is a huge supporter of St. Judes.  They even have a wing of the hospital named after them (the Chili's Care Center).  During the month of September you can visit their website to find out lots of ways to help.  Create a pepper, eat at any Chili's on September 26th, or you can pass their link on to friends to help gather donations.  www.createapepper.com

Of course you can always donate directly to St. Jude.  https://shop.stjude.org/GiftCatalog/donation.do?cID=13342&pID=18310&source_code=CMPCHILCP11&plt=CALGENLKCHILI1000002

One other thing to keep in mind; in November we will be participating in our local Give Thanks walk.  We will be raising money for St. Jude through this walk, so you can sponsor Emma and all money will go directly to St. Jude.  I'll have more info on that in the future.

If you don't have a penny to spare, don't sweat it.  You can spread the word about childhood cancer, and don't forget that gold ribbon!

If it happens to someone you know…

Many people have expressed a desire to know what is right (and not so right) to do when someone they know is diagnosed with cancer.  Here are a few pointers that I have come up with. 

*Do offer specific assistance.  Generic questions like, “Do you need anything?” or “What can I do to help?” are likely to be met with an assurance that everything is fine.  Instead, try offering to make dinner on Tuesday, or pick up the kids after school on Friday for a play date.

*Don’t be a downer where the illness is concerned.  Statements like, “That’s terrible!” will only bring about depression, and even bitterness, in the parent.  They shouldn’t feel the need to pick you up!

*Do offer a shoulder to cry on when your friend needs to vent.

*Don’t talk only about the child’s illness.

*Do make an effort to remember the answers to questions you’ve already asked.  Like the pregnant woman who hears the question, “When are you due?” over and over, the parent of a sick child gets frustrated answering the same questions (from the same person) again and again.  I don't mean answering "How is she?".  I mean questions like, "Is she done with her treatment now?"  If you don't care enough to remember that no, it's not for a long long time, then it probably doesn't matter too much, anyway.

*Don’t forget them a year down the road.  Many well-meaning friends and family move on with their lives, and expect that their friends with the sick child have as well.  Most often, they haven’t yet.  Living in limbo is not easy.  If you have the time and resources, help is still appreciated.

*Do remember to have patience with your hurting friend.

*Don’t be afraid of saying the wrong thing—instead, speak from your heart.  When the elephant in the room is ignored, it is always uncomfortable : )

First Time To Give Blood

On Sunday I gave blood for the first time.  I know, I know, that is ridiculous!  I should have been giving blood well before this weekend.  But I have small, rolling veins, and low blood pressure, and this caused issues with IV's both times I was in labor with my children.

Anyway, I've wanted to give for a long time, but things in Memphis are always so hectic, and when we're here at home I've always got the girls with me, so donating then is out.  But Sunday I was all alone, and had the time, so I stepped up to the challenge in the LifeSouth bus at WalMart.

It hurt!  They had trouble finding a vein (remember the small, rolling veins?), and they had to tie the tourniquet REALLY tight.  It took many, many minutes to fill up a bag of blood.  My entire arm hurt for the rest of the day.

And as I lay in bed that night thinking about it, it hit me.  SHAME ON ME!  How dare I complain about being stuck with a needle one time?  How dare I complain about a tender arm after the needle stick?  How dare I complain about this very minor discomfort?

My 5 year old gets stuck every single week.  She rarely complains.  She lets people stick things all over her, poke her, pull on her.  And she does it every single week!  Shame on me.

And then my guilt went further.  How dare I complain about a headache?  An inconvenience.  An annoying person?  These things are minor, really.

How fast I forget what really is important in life.  How fast I stop being thankful for all of the GOOD things, and focus on the minor bad things.

So I am through complaining about the tiny discomfort of giving blood.  It will help someone out; maybe even Emma!  And do you know what?  I plan to do it again :)   I hope that you will join me!

Walking On The Edge Of Life

The world keeps moving forward, as time stands still for me,
I am the kid with Cancer, locked in battle to be free.
For all us kids on chemo, our lives are put on hold,
As we fight to stay alive, our chances good, we're told.
Our attitude is courage, we live this life each day,
Just waiting for tomorrow, praying cancer goes away.
Walking on the edge of life, we’re never looking down,
United here in front of you, until a cure is found.
©2007 By Lorna Mahan & Sinjin Andrukates


This week we were in Memphis, at St. Jude Children's Research Hospital.  I saw miniature warriors and pint-sized super heros all around.  I saw kids who were happy in spite of their circumstances.  I saw kids that were screaming because they were scared at what was being done to them.  I saw kids throwing up because their treatments were making them sick.  I saw kids walking on the edge of life.

Reading this poem and thinking about these magnificent children makes me cry.  And then I smile, because I look up at my own superhero.  I remember how today she did SO GOOD when she had to have x-rays done, even though she was so nervous she wanted to throw up (and knowing this is a routine occurence, that of having to do things that make her so nervous she wants to throw up).  Three cheers for my superhero, and all the others, too!



Source: Child With Cancer, Cancer Poems http://www.familyfriendpoems.com/sad/poetry.asp?poem=18624#ixzz1TLCUmSN1
Family Friend Poems

Further Along

This past weekend I learned of another family in my town who's daughter has been diagnosed with cancer.  I checked out their CaringBridge website, and read through from the beginning.  Reading about their heartbreak, the sickness, the fear, and the extremely difficult beginnings of chemotherapy...well, it brought back a lot of horrific memories. (You hear about war vets who have flashbacks--well, I have them, too. And let me tell you, they aren't much fun).

I can remember sitting in the hospital and seeing families who were obviously much further along in treatment than we were.  I can remember thinking, "Oh, why can't that be us?  I just want to be done with this!"  And now, I see others at the very painful beginning, and I am grateful that it's not us back there.  I am glad to be "further along", even though we still have 76 weeks to go!

Don't get me wrong, I still wish we were done.  Just this week I screamed in my head, "Okay God.  We're done now.  Can we have our real life back now?"  But still, I am thankful to be "further along".

Please keep the Dison family in your prayers...they desperately need them!  You can keep up with their journey here.

A Re-Visiting and Charity

Last week I posted about repressing any happy feelings for fear that they would bring on something bad--a jinx if you will.  Putting my innermost fears out there for anyone on the world wide web to see really made me realize that it was time to do something about them.  I am not a "sweep things under the rug and hope they go away" kind of girl.  So, I have made a list of things to work on, in order to give myself permission to be happy again.  Will it work?  *Katie Shrugs*  But it's worth a try!  I thought I would share my list, in case anyone else feels like doing some personal improvement along with me : )

1. God hasn't given us the spirit of fear.  He tells us this in II Timothy 1:7 "For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."  God loves us, and has gotten us this far.  He will still love us if something else goes wrong, and he will still keep us going in spite of it.  He doesn't want us to live in fear--and if the Bible says that God didn't give us this fear, than that means only one person did.  I decided that I will NOT give Satan that kind of power over me.  I WON 'T live in fear just because the devil whispers in my ear that I better not be happy.

2. It takes a village.  My family has not gotten this far alone.  We have a wonderful family, and wonderful friends.  We also have a wonderful church family.  How could we have come this far without them?  They have prayed for us time and again (and I mean this very honestly when I say this is the #1 thing I want people to do for us.  God can save these children like no chemo treatment ever can).  These folks have been with us through our toughest times, and I am sure in the fact that they will be here for us in the future.  If you are trying to fight for your life all alone, then you need to seriously re-think your strategy.

3. Trials will come regardless.  This is a key point, in my thinking.  Do I really think that just because I don't let myself enjoy all the happy things in life that no more bad things will ever happen to my family?  That's ridiculous!  Bad things will still come--that's just part of life.  So I need to enjoy the mountaintops while they're here.  And I intend to (at least to try!).

So that's my two cents.  I hope it helps someone : )

And now for my charity highlight.  In a few weeks we will be traveling to Walt Disney World via the Make A Wish Foundation and Give Kids The World.  So, I thought I'd tell you a little about them.  The Make A Wish Foundation began in 1980 when a police officer made a young cancer patient's wish come true--he became a police officer for a day.  The patient passed away two days later.  Today they are the largest wish granting organization in the world!

Who Are They:   Make A Wish Foundation

Their Mission Statement: We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.

How To Donate: Visit their website here.  There are numerous ways to help, including donating money, volunteering, or donating items.  You can also adopt a wish, meaning you can sponsor a child's wish.  I know of one family who's wish sponsor ran a horse farm.  The child's wish was to have a horse of her own, and her wish sponsor simply donated a horse.


We will be going to Walt Disney World.  When wish children visit Disney World they stay at Give Kids The World.  You can learn more about them here. 

Who They Are:  Give Kids The World

Their Story:
The story of Give Kids The World begins with a little girl with a wish and the desire of one man to make that wish come true.
The little girl's name was Amy. Amy had leukemia and one wish - to visit the theme parks in Orlando. To facilitate Amy's wish, the request of a complimentary stay was made to a respected hotelier. As he had done many times before, the hotelier gladly obliged and Amy's wish was that much closer to being realized. Sadly, the remainder of Amy's travel plans took too long to arrange and her wish was never granted; Amy had passed away. Time simply ran out.
This unfulfilled wish inspired a man, the hotelier, to make a vow that no child in need would ever be failed again. That man was Henri Landwirth and his desire to ensure that Amy's story would never repeat itself is where the story of Give Kids The World begins.

Their Mission: Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need.

How To Donate: Donations can be made by visiting their website.  You can also sign up to volunteer.

Warring Emotions

This morning as we drove to Emma's clinic appointment we were feeling great!  It was a bright sunny day, Emma was in a great mood, and Ashlyn had finally seemed to get over her little sickness.  I was thinking about two upcoming (free) trips we will be taking.  Emma was happily coloring in the back seat.

And then a terrible feeling of dread came over me.  I quickly reminded myself to stop being happy.  And so I was somber.

Sound strange?  It is, I know, but I can't help it.  I am terribly afraid of being happy because I just KNOW that as soon as I'm happy the other shoe is going to drop.  I have a nagging feeling that I'm not the only one who does this.  I think there are lots of cancer moms out there who dread what tomorrow will bring.  Beyond that, I would wager there are lots of other people who have been through something traumatic who feel this way, too.

I remember right before Emma was diagnosed.  We were blissfully happy.  We had a brand new baby; we were spending lots of time together (as opposed to Micheal working all the time); we had just bought a new car.  I remember even having a conversation about how happy we were.  How perfect things were.  Maybe God was giving us an extra dose of happiness because he knew what was coming. 

What she went to sleep to...

What she woke up to...(okay, I'm being melodramatic here, but see what I mean?)  Wouldn't you be cautious?

Whatever the reason it made me a bit paranoid, and now when I get that feeling of happiness I am suspicious.  I'm not really sure how to fix it, but I guess I should work a little harder on it.  What about you?  Have you ever felt that way?  How did you work it out?

Happy Birthday America!

This week's post is a little bit early, but I really had this subject on my mind so decided to post.  This 4th of July we felt especially celebratory.  Why?  Because a year ago we were stuck in the hospital, for the 5th straight week, fighting the beast called cancer.  Emma was as yet not in remission.  She could only sit if she was propped up.  She certainly couldn't stand, walk, or run.  We were living in absolute fear.




On the night of the 4th we took Emma to the glassed in porch area on the 2nd floor at St. Jude so that she could see the fireworks.  We waited, along with several other patients, for about an hour.  The fireworks never came!  We found out the next day that the city had canceled them due to budget cuts.

This 4th, Emma ran around the yard playing with her cousins.  She laughed and jumped.  She helped shoot off the fireworks in our driveway.  It was absolutely fantastic to be regular.  And that got me to thinking about how often we take for granted the "regular" things.  I am so happy for days that are fantastically regular.  We are always looking for bigger and better, and overlooking all the blessings that we have staring us right in the face.

So be happy and thankful for today.  It might not be here tomorrow.

Getting Support

The world of pediatric cancer can be a lonely place.  Friends and family can’t always understand.  Even a well-meaning friend can say something insensitive.  I was once told (by someone trying to give me an emotional lift) to “not let myself feel so sorry for myself.”  

Sometimes the only people who can understand are other people going through the same things.  With that in mind, I have put together a list of websites that include forums where those going through hard times can find others who are in the same boat.  I hope you find it helpful!

The Leukemia and Lymphoma Society Boards:

http://community.lls.org/community/bloodcancer/mychildhascancer?view=discussions&start=0

This is a link to the “My Child Has Cancer” board.  However, they have a slew of other boards if you’re interested.  Click here, and from there you’ll find the others.

The Brain Tumor Foundation Boards:

http://www.braintumorfoundation.org/forums/

 

The Melanoma Foundation Boards:

http://www.melanoma.org/community/mpip-melanoma-patients-information-page

This is a link to the forums.  There are also chat rooms, a blog, and more.  Click on this link, and you will be able to find the other areas.

*I could not find a specific SKIN CANCER board, so if you know of one, leave a comment to let others know!

Pediatric Cancer Boards:

http://www.topix.net/forum/health/pediatric-cancer

 

The Crisis Care Foundation Boards:

http://www.balicrisiscare.org/smf/

No matter what your diagnosis or problem is there are others going through the same thing.  Find a support system in your area by checking online or in the phone book!

Thy Word

People say a lot of things to you when your child (or you, for that matter) gets diagnosed with cancer.  “God won’t give you more than you can handle.”  “God has a purpose in all of this.”  “God will give you the grace to get you through it.”  “God allowed this to happen because he knew you could handle it.”

These are all well-meaning comments (though I don’t entirely agree with that last one).  However, things that I wanted to hear more were “We’re praying for you.” Or, “I read [insert specific Bible passage] today, and I think it really applies to your situation.” 

Today I would like to share with you the Bible passages that helped me hang on to my insanity, even if it was only by a thread.  They can help you, too, when you’re going through a tough time (I like to imagine I’m listening to the Bible on CD, being read by Morgan Freeman : ).

Ps. 46: 1-3 “God is our refuge and strength, a very present help in trouble.  Therefore will not we fear, though the earth be removed and  though the mountains be carried into the midst of the sea; though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof.  Selah.”

John 16:33 “In the world ye shall have tribulation: but be of good cheer; I have overcome the world.”

Jer. 29:11 “I know the thoughts I think towards you, thoughts of peace and not evil, saith the Lord, to bring you to an expected end.”

Matthew 18:19-20  “Again I say unto you, that if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my father which is in heaven.  For where two or more are gathered together in my name, there am I in the midst of them.  ”

Philippians 4:4-9 “Rejoice in the lord always and again, I say rejoice.  Let your moderation be made known unto all men, the Lord is at hand.  Be careful for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known unto God.  And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.  Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.  Those things, which ye have both learned and received, and heard, and seen in me, do: and the God of peace shall be with you.”

Do you have any Bible verses to share?  Please do!