Test Day

Julia had her anorectal manometry test this morning.  Let me just say it is about as fun as it sounds. Let's just say all this did not stay on the tray.

Julia was a wonderful sport about the whole thing.  She happily went off to the hospital this morning.  We talked on the way there about what was going to happen.  The nurse, Candice, that did the test was great with her.  She didn't have any anxiety about the procedure.  They did a variety of tests to test pressures and muscle tone using sensors, air pressure, and saline.  The read out on the computer looks something like an EKG.  From what we were seeing on the screen it appears she has some level of sensation which is a good sign.  Julia had her pack of dogs along to keep her company... 

And when we needed some distraction, the two men hanging on the windows did the trick.  I never thought about it before, but the windows need to be washed somehow.

Julia was a wonderful patient and cooperated with everything asked of her.  She could not have been better.  Candice brought her a prize from the treasure box and apparently she knows her well already.  Animals are definitely the way to this girl's heart. She adores her new mommy and baby sheep!

The study will now be reviewed by one of the GI motility doctors and he will tell us what all the results mean and what needs to be done next.  I had to call after we left to make an appointment with them.  The conversation was interesting because Julia has not been seen by these doctors already which isn't the way this usually happens.  After some back and forth, she was given an appointment on September 23rd.  It seems far away, but with a typical six month wait for these docs, 25 days isn't too long in the grand scheme of things.  So in the meantime we will continue winging it and doing what we can to help her along.  We are continuing to pray for healing.  We have seen some small glimmers of hope the past few days that made us wonder if she wasn't gaining some control- possibly? a tiny bit? It is very hard to tell.  At this point any step, no matter how small is an answered prayer. So now we wait until Thursday for her next two appointments.

Thank you all for the continued prayers for our family.  It truly carries us.  We have felt it from the very first moments of this cancer journey.  When our situation is being covered in the prayers of many, we feel a peace that cannot be explained and a sense of calm in the eye of the storm.  We know the battles are raging on around us, but we are enjoying this moment to catch our breath.

Field Trip!

When Carter was in preschool we were part of a homeschool co-op.  One of the coolest parts was the field trips.  Julia was too young to remember and attend some of them.  When I was at the homeschool convention, some other moms and I were talking about how much we all enjoyed the field trips two years ago.  The decision was made to do it again.  Yay!

Last week was our first of many trips this year.  One of the greatest perks of homeschooling is the freedom to learn anywhere and any time.  The number of families we know who are homeschooling is continuing to grow.  The families are growing, too :) Our first trip was to...

We pass this dairy all the time right here in town.  I had no idea how busy this place is! These milk silos...

process and package all the milk and ice cream for ALL the Harris Teeter stores in the country! (and the Wendy's frosty mix, too!)

(soon to add yogurt and sour cream.)

We started in the classroom where the kids listened to a presentation and asked questions.  Then they watched a movie about where the milk comes from (family-owned farms of jersey cows nearby), how it arrives here, and how milk is processed and tested.  They have very high standards and will sell only the best product.  The ice cream sandwich machine was very cool, too.    This was a great follow up to the trip we did to Homeland Dairy in the past.

The kids did good answering the follow up questions.  Did you know each cow gives 7 gallons of milk a day? And the ice cream-making room is kept at -40 degrees! The workers wear parkas and are covered in frost in no time.  They have to thaw out every two hours.

After the lesson it was time to suit up to head in to the factory.  Hair nets are a big hit with preschoolers.  They didn't know the trip was going to include costumes :)

We were able to watch the machines run.  Boy, was it loud! (Only the kids over age two are allowed to go into the actual factory because the noise is very loud and constant.)

and so many working parts.  The empty jugs were flying by above our heads...

The trip was top off with some yummy sampling.  Mmmm....

It was a great morning.  We can't wait for the next one.
    
On the other days we found places to go to keep ourselves busy and out of the house.

Some time at the zoo with Julia's girls...

...playing in the rain.  Yes, Julia is not wearing pants.  That's just how we roll around here...

At the end of the week it was time for an annual tradition, the Ice Cream Social with friends from church.  We have been with this group of couples since we were all childless, newlyweds.  A few years and over a hundred kids later, these are still some of our favorite people in the world to hang out with, so every August as summer rolls into fall, we break out the ice cream makers, grab some chairs and eat ice cream for dinner!

The kids love the playtime...

Carter and his little twin, Josh had a rousing game of football against their dads...

The dads better enjoy the touchdowns now before these boys gain a few more inches :)

and there's always time for some toddler mayhem :) Who needs toys and sports when you have cups, water, and puddles?

And so our week and weekend have come racing to a close and we start a new week.  Unfortunately, the plans for this one aren't quite as fun.  We head back to Brenners early in the morning for Julia's anorectal manometry testing.  please pray she is cooperative and comfortable for the procedure and we can avoid sedation.  We pray they are successful in gathering data and helping to diagnose and treat her issues.  Tomorrow we will schedule an appointment with a new doctor who will review the results of tomorrow.  On Thursday morning we will repeat her chest x-ray to look at the lung spots.  Later that day we will meet with Dr. McMullen (radiation oncology) to discuss the results of the x-ray, his feelings on further scans, and get his input on her persistent bowel issues.

There are many questions up in the air right now and we hope to make progress in some areas this week.  I must confess I say that with a tentative spirit.  Once again we are stepping out in faith having no idea what the week will hold and what news we will hear.    We pray for clean scans, definitive answers, discernment and wisdom in choices, and grace for each day that lay ahead.

Carowinds

Today, we seized the opportunity to get away and have some fun courtesy of our Give Kids the World Passport.  It is an amazing gift given to all their child alumni.  For the one year after your Make A Wish trip, your family may visit over 100 amusement parks in the country for one day free of charge.  It is an incredible blessing that makes the emotional and psychological benefits of wish trips last even longer.  Things around our house have been stressful and emotional lately and we are gearing up for a long week of appointments at the hospital starting bright and early tomorrow.  So it seemed fitting that today we would take a break from it all and have some fun at Carowinds...

The kids had a ball riding all the rides at Planet Snoopy...

 

One of the benefits of going now is that the crowds are light and the lines are short.  The kids were able to stay on most of the rides over and over again.  I think this was their 4th flight? And just as exciting as the first :)

I love that they are at the age where they love the kiddie rides just as much as the big rides...

Neither of them had any hesitation to jump on the roller coasters, too! I must say I was not that daring at their age.  They rode everything they were tall enough to ride.

For Carter that included one of the bigger coasters with the bar over the top and your feet dangling beneath.  He rode it twice in a row and even volunteered to ride in the front seat!

Julia was very sad to be too short.  She must have measured herself a dozen times.  It won't be long.

There were plenty of other fun rides to keep her distracted.  She loved driving the cars.  They were really cool old-fashioned corvettes...

Daddy and Uncle Anthony rode a few of the big rides and then joined us again.  I think The Intimidator had done him in though because he almost lost his cookies on the pirate boats...

I must say it did some serious bouncing and spinning (that would be why it was Daddy's turn to ride).  He went into right after The Intimidator.  I think 39 may be the age limit for being hurled 211 feet at 75+ miles an hour.  Not for the faint of heart or stomach...

It didn't take that kind of height or speed to remind me I'm not a kid anymore.  Somewhere around this point...

I was thinking, "Man I feel dizzy and lightheaded. I am getting too old for this." I really think the peak for amusement park years is 18-24.  After that it is just painful.  The long list of precautions and red Xs on the entrance signs should just say, "Middle-aged parents best not ride."  I much prefer to be the smiling, waving, picture-taking, pack mule parent waiting by the gate :) That works for me.  Unless we're talking about the Carousel, I can do that.  After two consecutive trips on The Scrambler today I was feeling, well... scrambled.

Overall it was a great time...

topped off with one of the highlights from the day... The Icee Mixer!

15 flavors of Icee paradise! It was like Feeney's for slurpee fans :)  I'm thinking I need one of these walls in my kitchen. And yes, we went back for refills :)

We all left hot, tired, happy, and hungry.

A great day finished off by a great meal at Cracker Barrel.  Billy and I spent the meal telling the kids about all the things that weren't invented when we were kids and when there grandparents were kids.  It was hilarious! You should have seen their faces at the idea that we didn't have cordless phones, DVDs, remote controls, kids' TV channels, or computers.  Carter said he loves to eat the old-fashioned food and hear about old history.  Yes, that would be us :)

The whole conversation started last week when I pulled out an old VHS tape for the kids.  I then told them it had to rewind first.  If your ever bored and want a challenge, try explaining to your preschoolers what "rewind" means and why you have to wait.  Julia just looks at me like I'm nuts.

Bathing Beauties

I hope I never reach a point in my life when there aren't toddlers around to take a bath in my sink :)

Sinks that only see dishes are very sad. Love you cuties!

Happy Birthday Daddy!

The summer birthday bonanza continues.  This Friday we celebrated Daddy.  The kids love to "surprise" him on with cake...

presents...

and party time...

We are so blessed to have such a wonderful man leading our family.  He provides with a life of comfort and fun, he works hard so I can stay home to care for and teach our kids, he puts his family first and spends as much time with us all as possible, he can step in seamlessly and completely care for the kids and house, he makes everyone around here laugh and smile, he loves God and seeks to serve Him, he loves to surprise us, he takes the time to pursue the things each one of us enjoys, and most of all he loves us.

In the past few years he has carried our family as I have struggled with depression, thyroid disease, and our family has dealt with Julia's cancer.  He is not afraid to carry the weight of the work in the house and he does everything on his power to get us all to the next step.  he knows how to make us laugh and he knows how to make us feel loved.  And you've done all of this while totally rocking a life changing weight loss! You decided back in February to get healthy.  And as they say, "There's an app for that." Thanks to the Lose It program and your iTouch, you started counting calories.  In a matter of days the weight was falling off.  Now, six months later you are the healthiest you have ever been with a new wardrobe (of 32s!), a regular gym and biking habit, and 73 pounds lighter than last year!! It has been an amazing, almost overnight transformation to see you completely reborn.  We are so proud of you, you new found health, your new outlook on life, and the years added to your life with all of us.

Happy Birthday honey, you totally rock :) !! 

So, on your birthday here's one of our favorite clips.  This, too, is your life, and you have embraced it fully :)

Dad Life from Church on the Move on Vimeo.

Helping Hands

When cancer invaded our lives, we began to feel the calling to make a difference in the pediatric cancer world.  And we are not the only family who feels this call.  As difficult as this past week has been, we have also been able to help make a difference and that has meant everything.

Last Saturday, we went to an Alex's Lemonade Stand event in honor of our friend Lily.  There is just something about kids and selling lemonade.  It was a hot and sunny day.  Carter and Lily held one of the signs by the road to attract business...

Lily's big sister Anna setting out lemonade...

Carter and Julia enjoying some of the yummy treats...

There was even free Hawaiian Ice :)  After chatting for awhile, Carter and Julia would ready to jump in and help.  I had the privilege of standing back and watching them all, a fly on the wall to their conversations.  I have to say it made me teary.  When Lily would introduce herself to people to people she say, "I'm the one with the cancer.  This is Anna, she's the one without." Anna immediately noticed Carter's Give Kids the World shirt and they jumped right in to talking about their own Make-a-Wish trips.  Then they each gave each other the kid's version update of their siblings' cancer treatments.  Truly, not the things of childhood, but daily life to this handful of kids. 

They had a great time selling lemonade to their customers.  They are all little entrepreneurs in the making ready to do whatever it takes to fill those big jars with cash.  In the end they raised over $1,000 in an hour and a half! Such brave little warriors, raising money for the war they are all fighting.  Profound.

Then on Monday night we headed to The Loop for their first fundraiser for our foundation- Kids of Childhood Cancer- at Brenners'.  We were so excited to see all our friends who came out to support the cause. 

In no time the place was completely packed.  It was heartwarming to see so many people coming out on behalf of our kids.  We had a chance to catch up with Vinny and his family.  We just love this kid! He, Carter, and Julia jumped right in playing legos.  Vinny is Mr. Lego.  I loved seeing their smiles and hearing them laugh.  Vinny looks so good these days.  For a child that was told last winter he had two months to live, has endured some horrible chemo, and was put on hospice not to long ago- he is a walking miracle.  The doctors cannot explain.  The tumors have shrunk, he was taken off hospice, and this week he went back to kindergarten.  Though his battle rages on and regular inpatient chemo will continue. We love you Vinny!

These kids inspire me.  They are heroes in every sense of the word.  They have endured more in one handful of life years than most adults do in a lifetime.  I can't think of a better way to spend an evening than hanging out, playing legos, and drinking milkshakes.   

And we raised $585 for Camp Brenner kids!!!

Broken Heart

I was scheduled to return to the cardiologist this afternoon to get the  results of my 3-day monitor.  I was meeting with the electrophysiologist this time- the electrican of the cardiology department.  We had just finished eating breakfast when the office called to say he had an emergency and needed to fly out this afternoon.  Could I please come right now? Sure... by now, how soon do you mean? By the time I showered dressed the kids, secured earlier babysitting, and got everyone out, "now" was more like an hour.

The nurse came in and did another EKG, not sure why, how many of these does one person need in a month? When the doctor came in he clearly was not familiar with my case.  Frustrating.  He took a quick history and asked when I was scheduled to wear a monitor.  That's why I'm here.  To hear your interpretation of those results! So, he proceeded to review it right there.  This is going to take longer than I thought.  He did seem to have a good grasp of the situation.  For those of you not familiar here is the short history...

I started having episodes of rapid heartrate when I was 16.  A week at Bethesda ruled out a variety of conditions and I was diagnosed with SVT (supraventricular tachycardia).  I did not require treatment until I was 25 and started having dozens of episodes a day.  I was put on beta blockers and things have been going along great for the past decade.  I was diagnosed with Graves disease 2 years ago and had my thyroid removed.  They just regulated my thyroid med levels this past winter and in the spring I started feeling really sick.  It was determined my beta blockers were now toxic to my body.  No one knows why this happened and I was weaned off them.  I felt better for a few seeks, then the SVT started back.  So now, it's time to talk ablation surgery to try and cure this condition for good.  To make that decision, I was put on a heart monitor to attempt to capture the cardiac events. 

When he looked over the heart monitor readings, he said it confirmed the ventricular tachycardia and was definitely a candidate for ablation surgery.  It is done as a catheter procedure.  They thread their instruments through both the groin arteries and neck if necessary.  The heart is then mapped, from an electrical perspective.  The offending nodes are then ablated by laser.  He asked if I wanted to watch a video of the procedure.  Umm... no.  I don't want to remember a bit of it, if you don't mind.

He left and his nurse scheduler came in with her calendar.  She opened it and said, "So, what do your next few weeks look like?"  I started to cry.  They don't know anything about Julia's situation.  I told her about her upcoming tests, appointments, and open-ended questions.  And she started to cry.  So, we went ahead and put a surgery date on the books for September 20th-op on the 14th.  They are waiting to hear back from me after all of Julia's upcoming appointments. I am also considering switching to a different doctor who I have heard many positive things about.  Please pray that we make the right decision about doctors, hospitals, and timing.

The GI Motility department at Brenners' called me back on Monday.  They have Julia scheduled for Monday, August 30th.  The nurse talked to me for a long time about the procedure and Julia's history.  GI had called in a versed prescription for us to give her before the test.  In talking with them yesterday, we determined she likely will not need it.  In the grand scheme of all she has been through, this should not be terribly uncomfortable or upsetting to her.  We are hoping to keep her conscious so they are able to get her feedback on sensations if she chooses to cooperate.

When we got back to the house today after my appointment their was a message from Dr. McMullen's office.  He is Julia's radiation oncologist (Dr. Hot Dog).  Nurse Diane had emailed him last week to get his input about Julia's bowel situation.  He wants to see us asap.  He is probably going to be upset that we did not call him sooner, but I am happy that he is on board at this point.  I have nothing but the utmost respect for his approach, knowledge, and discernment.  He was a strong guiding force in Julia's initial diagnosis and treatment plan.  They had an opening on Thursday, September 2nd.  That is the day of her next chest x-ray, so they told us to come down after that and Dr. McMullen will actually interpret the results for us.  I am eager to hear his input and be able to pick his brain in this situation.  I have complete trust in his skills.  One of our fears is that the outcome will still be vague after the x-ray and we will be forced to make the decision for a CT scan or not.  I would much rather Dr. McMullen make that decision, or at least weigh in heavily.  

After the appointments were all set up, I checked my email and received the devastating news.  Kate, from our Brenner's family has relapsed and is being sent home on hospice.

Two years ago, at the age of 3, Kate was diagnosed with leukemia (ALL).  Treatment was tough on Kate and she suffered many debilitating side effects and infections.  She made it through to maintenance and sadly, last February, was diagnosed with a relapse.  She would need a bone marrow transplant to survive, but she needed to be rid of the cancer cells first.  Her family was offered hospice, but they found out about an experimental drug in Italy- Kate's Italian Kryptonite.  Kate's devoted prayer warriors, her medical team, her wonder drug, and her amazing God got her to transplant at Duke.  On May 18th she received bone marrow from her brother Jarod.  Kate has had a very rough summer, but was one week away from reaching her 100 day mark when the relapse was found.

There is nothing more medicine can offer Kate.  She has been sent home on hospice to be with her family as her condition deteriorates.  Kate is one of 5 children.  This family has faced unimaginable challenges.  Mom, Susan, was pregnant with baby Bella when Kate was diagnosed.  Baby Bella lived on the oncology floor for the first few months of life and for the past year has had to be away from her mother.  The family has been completely torn in two for the past 2 years.  They live in a 1200 square floor house that barely fits their family of seven.  They were one of the final two families considered last year for ABCs Extreme Makeover Home Edition, but the house went to another deserving family.  At the tender age of 5, Kate has already reached her $1 million dollar cap for health insurance and the bills are piling up.  The family is now unable to buy a new home.  Sweet Kate does not even have a bedroom or bed of her own to come home to.  A foundation has been set up to secure a home for this family.  If you feel lead, please help in any way you can.  And please lift up Joe, Susan, Jarod, Parker, Julia Faith, Bella, and princess Kate in prayer.  We believe in God's miracles! We ask that He carry each one of them through each and every moment of the coming days.
   
So my heart is broken, both literally and figuratively.

Thank you for the love, prayers, and support for us and all those we hold dear.