A Helping Hand of Hope

One of my personal goals for Childhood Cancer Awareness month was to get the word out on ways people can help make a difference.  It is true that knowledge is power, but without action we can't spread hope.

So we'll start with some local ways to help.  Some of these are specific to our area and others you can do wherever you may live.  Ways you can give hope to cancer kids...

• Donate BLOOD or PLATELETS.
• Drop off a supply of SNACKS or candy to the pediatric oncology floor at your local children's hospital.  Ask the nurses to put it in the family lounge.  A nice note to the families is a great personal touch.
• Donate ART supplies, crafts, games, TOYS, DVDs, or video games to your local children's oncology floor.
• Make a $ contribution to our local non-profit, KIDS OF CHILDHOOD CANCER Foundation which directly supports the families on the floor.  If you cannot make a financial donation, consider giving items for our next YARD SALE Fundraiser on October 16th.  Items can be dropped off to me anytime or I can come pick them up at your home (just leave a comment, send me an email, or leave me a message).
• Come out and eat at THE LOOP (Kernersville) on Monday night, October 4th.  Come in and eat anytime between 5 and 10pm and a portion of every purchase will go directly to the Kids of Childhood Cancer.  Last time, we raised $585- just by eating dinner.  It couldn't be easier.  We hope to see you there!

Help us give HOPE to cancer kids!

A Glimmer of Hope

As September goes on, baby steps are being made to raise awareness for childhood cancer. There have been several new companies who have joined the fundraising efforts.  St. Baldrick's continues to grow and surpass their past numbers.  I smile every time I see a Hyundai with a Hope on Wheels sticker in its window. Kids' stories are continuing to be shared.  Parents are brainstorming and uniting.  Some celebrities are jumping on board to play a role. 

It still surprises me how little people know about childhood cancer.  It seems almost everyone a you encounter knows of several children who have battled cancer, yet no one stops to think much more about it.  Even in the medical field.  It surprises me when doctors and nurses comment on my t-shirts or bracelets and are shocked by the answers I give to their questions.  But this is how change happens, one small step at a time.    

There has been a small breakthrough this month that may lead to something even bigger on the horizon.  This month's meeting of the Pediatric Cancer Caucus on Capitol Hill made some big strides and shared some brutal honesty.

The Man with Plan

The man with a plan

Drew a line in the sand.

His demeanor is so grand,

I want to kiss his hand :)

Sorry for the lame poetry, but that's what happens when you live in the world of chronic illness- you develop a weird sense of humor.  

Anyway, Julia's appointment with Dr. Fortunato (GI Motility) yesterday went very well.  He is an excellent doctor.  He received his training at Cincinnati Children's hospital who are one of the top 3 in the world in this pediatric GI medicine and he still works closely with them.  I felt very comfortable with his understanding of our situation.  We waited a while to see him yesterday.  The nurses were overly apologetic and accomodating.  We were just so happy to be getting in that waiting is nothing to us.  It's amazing how your perspective changes.  After spending over a year in the chemo clinic, the meaning of "appointment" takes on a whole new face.  To us a quick appointment is anything under 4 hours that doesn't skip more than one meal.  It's just a whole new perspective, I guess.  Anyway, we were happy to wait and found ways to pass the time.  I have such appreciation for what these docs do in a day.  Dr. Fortunato had a 7am conference with the urology team, a morning full of surgeries (several which ran over), and an afternoon packed with clinic appointments.  I don't know how they do it?

He reviewed her history and then we talked about the future.  His basic assessment is that Julia's colon is not functioning as normal.  The cause is still up for grabs.  Could be abdominal surgery, or radiation, or long term impaction/stretching/etc. from chemo.  Take your pick.  Regardless of the cause (which we may never know) the plan would be the same.  Her anorectal manometry test from last month showed some sluggishness of her lower GI tract, but no major red flags and it only tests the very end of her tract.  He was happy that we had a current regimen that was working for her and actually gave us permission to continue.  My biggest concern was that the meds we were using to treat her were causing further damage.  He assured me this was not the case.  Daily laxatives are obviously not optimal in the case of a healthy child, but in these situations it is better than a surgical alternative.  The data coming out of Cincinnati Children's right now is very "laxative friendly".  They are encouraging much higher levels than previously used because it is able to save children from surgical interventions.

That said he told us he was drawing a line in the sand.  We are to continue daily miralax and dulcolax suppositories until December 3rd.  He wants us to skip a dose each week in the hopes of her body healing to the point it can take action on its own.  If we sense some healing than we can try skipping another dose.  If at any point the regimen stops working or her pain increases we have to stop and see him sooner.  If she has not made progress by Dec 3rd, the next step is to have a colonic manometry (STEP 2) done to look at the inside of her colon and test its functionality.  If this would show her colon to be functioning poorly, they would do another surgery to put in a tube with direct access to the colon (STEP 3)- similar to a feeding tube.  This would give us a means of externally stimulating and flushing her colon.  If that was not successful they would determine which part of the colon is not working and then surgically remove it and do a colon resection (STEP 4).  Obviously he hopes to avoid these steps, but he wanted to give us the full plan up front.  I like this man, he thinks like I do.  I want all the cards face up on the table and then we can put the deck away and hope we don't have to deal again, felt the same way about her initial cancer diagnosis 

So for now he wants to give her the benefit of the doubt and give her body a little more time to heal.  Little bodies are amazing in their way to cope, adapt, and heal themselves.  He said it is his policy to keep sharp objects out of little bodies for as long as possible, so she's got ten weeks.  He was clear that he was not making any promises that surgical intervention would not be necessary, which is why he laid it all out on the table, but he said we have not reached that point just yet.

We talked briefly about potty training and he was not optimistic about it happening anytime soon.  At his early morning conference with our urology team he said this very topic came up.  The urology docs have a lot of issues with the GI motility patients and wanted some insight into what is going on.  Dr. Fortunato admitted there is no easy answer.  These type issues are so complex and intertwined.  They are physical, psychological, emotional, and behavioral.  Any progress made is very slow at best.  So we are going to dabble in the "pee potty training" again for the next few weeks before our check up with Dr. Hodges in urology next month.  Our last two attempts have resulted in UTIs, so hopefully we can get a different outcome.

And on my medical front, we made a little bit of a breakthrough today.  As I was getting all my records and medical history together to see Dr. Klein next week, I was listing my current symptoms.  It turns out I have 10 of the 12 symptoms of hyperthyroidism.  This may seem odd because I had my thyroid removed.  My ER visit this week was almost an identical experience to my ER visit just before the Graves' disease was diagnosed.  They didn't make the connection then either.  So I called the endocrinologist and he wanted me to come in this morning.  He agrees it sounds like my thyroid medicine levels may be to blame for some of this.  He attempted to call the hospital to get my labs from Wednesday.  Unfortunately, since this hospital is not in the same network as my other seven doctors, record sharing is tough.  Privacy acts are such a pain. This is the price I have to pay for jumping ship.  They tried for a while and never got anywhere, but I am hopeful that we may be on to something.  None of the doctors have been able to figure out why my body has been such a chemical mess the past five years, but with answers, maybe we'll find solutions to this, too.     

So things are looking up and we continue to pray for everyone's healing and progress.

Musical Hospitals

I feel like we're making the rounds these days. 

As many may know I was scheduled to have a heart ablation this past Monday.  I actually ended up canceling that procedure.  When I was scheduled to see the electrophysiologist it was to discuss my 3-day heart monitor results and determine if ablation surgery was appropriate in my case.  When the doctor walked in the room, he had no idea why I was there, had not looked at my case, and had not reviewed the monitor readings.  He did a thorough exam and history and spent about 15 seconds looking at the monitor, he said.  I left with a scheduled surgery date and more than a few concerns.  Two days later I have a message on my answering machine from the cardiology office saying my 3 day monitor results were in and everything looks fine, just continue as normal.  This pretty much solidified my desire to get a second opinion. 

I have had multiple recommendations for another cardiology EP doctor in town- Dr. Klein.  He has stellar credentials, an excellent reputation, AND he's a member of our church.  I am sold.  Now, to get in with him.  I have felt good this month until the past few days.  This morning I was woken from a deep sleep with a racing heart again and knew I needed to do something, so I went to the ER.  This time at a different hospital- out of network from all my docs and records- but a part of this new doctor's network.  They were great and did a full battery of tests, labs, and procedures and could not come up with any acute issues.  But I did get a referral to see the new doctor, so I now have an appointment for October 6th.  Please pray that this is the answer to many decades of questions.  I realize ablation surgery is highly likely, but I just want to know that the decision is being made based on good evidence and knowledge.  I look forward to feeling better again.  I have heard many success stories and would love to feel good again.  It's been many years.    

And tomorrow is Julia's appointment with the GI Motility doctor. Please pray that Dr. Fortunato has wisdom and insight into Julia's issues.  We are very hopeful about getting a plan for her tomorrow.  I know the fix will likely not be quick, but at this point we just want some insight and a plan.  Julia is actually looking forward to the appointment, too.  I think she is tired of all of this, too.

Thank you all for your continued love, support, and prayers for all of us.  It makes all the difference. 

Fall Ball

Tonight was the first game of the season.  Carter has aged up to the U-8 league and chose to play baseball this fall instead of soccer.  He is so excited to finally be in the league that plays for outs and keeps score.

Daddy has grown into his role as head coach well.  He planned to help out with Carter's team this year, but at the initial skills test, he ended up head coaching one of the teams.

Carter made some good plays...

...had a few strikeouts and a few hits...

One of his favorite parts is that they finally have catchers- his favorite position.  Our little Carlos Ruiz in action...

and you know you're movin' on up when the team hangs out in the dugout...

We're looking forward to a great season.  though I don't know if I have the nerves for it.  Does anyone else cry at kids sports? I just can't help myself.  I see all these kids, their coaches, and parents and then spend a few hours watching them strive, fail, succeed, learn, and grow.  I get teary just thinking about it.  Don't worry, I'm not one of those moms.  I keep it to myself (keep my sunglasses on) and just encourage the team from the stands!

Farm Field Trip

This week was field trip time again.  This time we were heading to a farm to learn about all the work a farmer does to get our food to the table.  Patterson Farm was an beautiful place and huge! 

They were busy at work.

The farm was all decked out for fall, but the 95 degree temps made it hard to believe.  It's starting to feel like summer may never leave.

Off to work under the watchful care of Farmer Sid...

The kids started their day pretending to don their overalls, hats, and boots.  Then they got their baskets and headed to work.

The early morning starts in the barn feeding all the hungry animals.  Julia was in love!

seeing so many sweet animals face to face...

AND feeding them.  Herman the baby goat made his rounds in the crowd of kids to be held and fed...

Farmer Sid let them pet the bunny, too...

 

Have to feed the chickens, too.  Julia and Nathan eagerly stepped in...

After the Butterfly Garden and the Bee Barn, it was time to gather the eggs...

And milk the "cows"...

Then Farmer Sid asked them to churn the butter.  I think Julia, the little butter-lover would have a lot of work on her hands trying to do it the old-fashioned way.

Then we headed out to the vegetable patch to pick toamtoes, strawberries, pumpkins, and potatoes.

Then they had a chance to plant their own seeds and learn about soil and composting.

The farm has a great playground with horse swings...

a corn silo...

and corn mazes, ride-on John Deere toys, and playsets.

When the work and fun was done, it was time to head back up to the market to "sell their wares".  They sorted all their products into baskets...

And then went to the counter for their market bucks...

It was a fun-filled day of work and fun.  Hopefully the kids walk away with a new appreciation for all the work that goes into the food we eat.

Go Panthers!

It was time for the annual Father/Son Panthers Game at church.  Carter looks forward to this day all year long.  They headed to Charlotte a day early so Carter and cousin Kyle could have more time to play.  They were all pumped up for game day. 

They arrived early to meet up with the group and tailgate.  I don't know which Carter likes better the actual game or the tailgating.  He loves playing pick-up football with all the big kids.  And I'm happy to report he was not one of the two taken by ambulance when they collided and split their heads open! Don't worry though, they were stitched up and back in time for halftime.

Two little fans ready for all the action- flyover , football, halftime, and fun!

They had a great day, though really hot.  Unfortunately, the Panthers couldn't pull out a win against Tampa Bay :(

One tired little panther on the way back home...

Working Mother Article

September Is... A Cancer Story

It’s back to school time, but for kids with cancer, a regular school day may not be an option. Instead of learning in a classroom or following a standard curriculum like their peers, they are learning to battle diseases with names that sound like dinosaurs–pediatric cancers. September is National Childhood Cancer Awareness Month. Here we kick off  a series of articles, galleries, inspirations and why.

Author 

Helen Jonsen

Pediatric cancer is the number one disease killer of children in the United States and that means that one child in every four American elementary schools will be diagnosed with cancer. If you are not related to a child with cancer, your child may know someone suffering. Over 12,500 kids under 15 will be diagnosed this year–whether it’s with a blood cancer like leukemia (one of the most common forms) or a bone cancer like osteosarcoma (more rare).

And now each September is deemed Childhood Cancer Awareness Month. So few of us are directly touched by the disease we sometimes are not aware of how little is being done to research its causes and cures. Often, all we imagine are the kids in the St. Jude ads and television commercials with their round faces and bald heads who they tell us have survived. (Often the round faces are due to treatments with steroids). While it is one research center, St. Jude does not work exclusively on cancer research. A consortium of hospitals and practitioners work together through the Children's Oncology Group, sharing results across buildings and states. But even that is not enough.

Survival rates have gotten marginally better in the last decade. 75-80 percent of kids with cancer will survive for five years.  And while that number sounds somewhat rosy, it means more than 20 percent still die. We also know that among those survivors will be kids who may succumb to second cancers later, either as a result of treatment or for reasons unknown. We also know that many of those children (and their siblings and parents) will fight Post Traumatic Stress Syndrome (PTSD) and its various symptoms. And we know that many of those survivors will live with scars forever–the loss of a limb, the need for an internal prosthetic, learning disabilities, hearing loss, nerve damage or more.  The survivor statistics only tell part of the story.

Currently, less money is spent each year on childhood cancer research than the cost of one big-name Hollywood movie or a weekend take at the box office for the top five films that week. The American Cancer Society spends a small portion of its fundraising dollars on childhood cancer. So all the Relay for Life programs that involve kids in schools, while wonderful, give very little to pediatric research or the post-treatment support needed for young survivors. Other groups who are not so well known focus only on childhood cancer fundraising: Curesearch, the outreach arm of the Children's Oncology Group, St. Baldrick's Foundation, Alex's Lemonade Stand Foundation, National Pediatric Research Foundation and other smaller organizations across the country.

Research is not sexy but it saves lives in the long run. Awareness also saves lives because it raises interest and raises money – and it may help a family understand the symptoms or learn where to find the right treatment if its ever needed. This group of related articles on workingmother.com seeks to do just that.

Related topics 

The State of Pediatric Cancer Research Funding

Where Kids with Cancer Are Treated

Kids with Cancer: Inspirations

Kids with Cancer: Resources for Loved Ones

First Person: Dr. ZoAnn Dreyer On Kids With Cancer

Carousel Festival

After a week of ups and downs, Julia seems to be feeling better this weekend.  Daddy and Carter already had plans for the weekend.  She was supposed to have her first soccer game this morning, but has decided this week soccer is not her thing.  She likes the uniform, the cleats, the new ball- but the catch? She only wants to play in her own backyard and wants no part of anyone taking the ball away from her.  After several practices and lots of tears we decided to throw in the towel.  We think a lot of her desire comes from watching her brother all these years and not necessarily her own interests.  At this point dance and Awana are plenty for her, so soccer is on hold for the future.  After two years of having little or no say in what happens to her and being isolated from life, we want her experiences to be positive and we are all about eliminating the unimportant.

So with our calendar clear, we were free to plan our own Girls' Day.  When I asked her what we should do, she said, "When you and I spend the day together we usually go to the hospital." Sadly, that has been so true.  So today we had to change that.  I suggested, "How about carousels?" Her eyes got big as saucers and her face lit up.  She was sold.  This girl could live on a carousel.  So we headed out to...

It's an annual festival put on by the City of Burlington.  This year they are celebrating the 100th birthday of their historic carousel...

They have done an incredible job preserving it's original working condition.

Julia loved the menagerie of animals and we rode several times.

The city, so generously, makes all the rides free for the festival weekend.  They were all right up Julia's alley...

It was such a treat to take her to a fall festival.  We had to miss all of them last year.  Fall just isn't the same without some fun outside.  We had a great day taking in all the rides, sights, entertainment, and fair food.  She was all smiles all day.

 

The sno-balls were definitely a highlight.  They tasted so good sitting in the shade on hot afternoon.

And we were blessed to run into some old friends from a long time ago at church.  It always amazes me that you can go to another city, in a crowd of 20,000+ and run into someone you know.  Isn't it amazing how God works that way? (It was great to see you guys! Thanks for the hugs!!)

I am so thankful for the gift of this day with nothing else to do, but enjoy my sweet girl.  This face says it all...

Lord, thank you for perfect fall days, for the gift of time, for the blessing of health, for loving friends and family, and for being the God of second chances.