Out of the Mouths of Babes

As we left Julia's urology appointment yesterday at the satellite offices, we drove down the interstate.

When we passed Brenner's Hospital, Julia started yelling from the backseat...

 

 "HI, GUYS!! Hi Nurse Karen, Hi Dr."Waffle", 
Hi Dr. McLean, Hi Nurse Diane, Hi Nurse Nancy, 
Hi Ms. Betsey!!"

Such a priceless gift.  With as much as she has been through and the countless trips to the hospital, with many more to come.  The simple things of childhood she has had to miss out on because of her health.  It warms my heart so much that she loves her medical team and feels so loved by all of them.  We could not ask for more.  Thank you God for Brenners and for each and every person in there who are Your hands and feet in the healing lives of our precious children.  We are blessed beyond belief.

To Pee Or Not To Pee (train)

...that is the question.  Or so we thought.  Turns out we were wrong.

Julia had a follow up appointment with Dr. Hodges today, her urologist.  After the events of the weekend with  her peeing blood, passing tissue, visiting the ER, and having another UTI- we were very thankful to already have this appointment set up.  Thankful that God knew in advance that we needed to end up there today. I anticipated we would discuss the recurrent UTIs and techniques for helping her to successfully re-potty train for peeing.  Not so much.

He was much more concerned with her lingering bowel incontinence.  He wanted to do a flat panel x-ray of her abdomen to assess and then we'd talk.  So he sent us across the hall to radiology.  It turns out that despite our regimen of suppositories and miralax, Julia's colon is completely impacted and not functioning at all normally.  I was actually cautiously optimistic because she has had some success in the past week that I was hoping was positive progress.  Unfortunately, the proof is in the film and the huge mass that is her colon in the center of the screen.

Dr. Hodges said it is impossible for her to gain bladder control under these physical conditions.  We cannot even attempt to address that issue until the bowel situation is completely resolved.  And then it will involve physical therapy, biofeedback, and intense retraining regimens.  He said the diffuse thickening of the bladder that was found in her recent ultrasound is a result of the pressure in the area from her colon as well as the bladder muscle's overreaction to attempting to control urine flow.  He said the UTIs are a direct result of this process and will continue until the bowels are repaired.  So she is 100% in diapers with regular encouragement to empty as much and as frequently as possible.

So where are we headed? Dr. Hodges feels Julia definitely needs to have a cecostomy or c-tube.  The GI doc gave us two options back in September: a c-tube or bowel ressection.  His plan was to assess in December and plan a colonoscopy to actually look at the inside of her colon.  If he finds a specific section at fault, then bowel ressection with temporary colostomy would be a fix.  If it just a poor muscle tone, slow healing issue than a c-tube would give a successful, temporary fix until she healed on her own (hopefully) in a few years.  Dr. Hodges wants us to call Dr. Fortunato and get the ball rolling.  It seems the line in the sand has been redrawn.  Waiting will just prolong the healing process which is already a long, slow road. 

So what is a c-tube? Essentially it is like a feeding tube, only lower and it is used to flush, not feed.  It would allow us to flush Julia's colon from "above".  It is placed at the beginning of the large intestine.  We would flush it once a day in a 20min to one hour process which would leave her free from issues and leaking the rest of the time.  If at some point her body healed and began to function on its own again, it can be easily removed. The more I learn about it, the more I feel this is the way to go.  Dr. Hodges feels she is the ideal candidate and this is the best thing we can do for her at this point. He will see her again in February to see if we are any closer to beginning to progress out of diapers.

So I guess that next bridge might not be as far off as we thought.  Looks like we may be crossing it in the every near future. I must say I am excited about the idea of "doing" something.  So much of this process has been waiting and experimenting with little or no success. We are ready to continue in the healing direction.  

And a side trip...

I don't know why this always happens to us.  Every time we travel we end up with someone in the ER.  Not always the same person and never the same problem.  I have yet to figure out any way to prevent it, it just seems to always happen.  I thought we had made it to the end of this trip and my clinic visit would be it, unfortunately that wasn't to be.

Julia has been feeling great and the kids have avoided picking up my germs.  Apparently the cancer road taught us some effective germ prevention skills.  We had gone out for ice cream and Julia had to go to the bathroom.  We are trying to pee potty train her, for the fourth time.  She has done pretty well the past week.  When she tried to pee she started to scream, tears streaming down her face.  Not a good sign.  As soon as she stopped she felt okay again. When we got back to the house we were getting ready for bath and she rushed into use the bathroom.  Immediately she started screaming again.  I felt so helpless.  She was just shaking and crying.  I decided to put her in the warm tub to see if it helped her to pee more comfortably.  She was finally able to go, but it was full of blood and mucous.  Not good news.

With only one kidney,  urinary tract issues are a huge deal.  They buy you a direct trip to the ER, do not pass GO, they will collect $200.  But what else could we do? Fortunately we've got family in health care in this area, so we knew just where to go.

The doctors and nurses were wonderful.  Dr. Lloyd, Karen, Shannon, and the sweet guy nurse who waited on her hand on foot made it as fun as they could.  She is such a trooper through all of it.  being in the ER doesn't phase her much at all.  She makes herself right at home.  She even sent me out to the car to get some things she needed.  She's completely fine with being by herself in there. She was not thrilled about being catheterized, but willingly let them do it.  They decided to make it up to her in treats.  One of the nurses, Debby, just came here from Florida where she worked at Disney.  She was there when Julia had her Make A Wish trip.  She decided to deliver Julia a special get well message from the famous mouse couple :)

Then they dressed her up as Peter Pan.  They even made a hat for her bunny that they fashioned out of folded paper- a little group project.  So sweet! Then they showered her with snacks and candy to pass the time.

The results came back as we expected.  Her urine was positive for blood white blood cells, and nitrates.  They out her on bactrim and sent off the cultures.  Ironically enough she is scheduled to see her urologist on Tuesday to discuss the kidney enlargement, bladder thickening, on potty training issues, and added to the list recurrent UTIs.  They are going to let him decide how to proceed further on Tuesday. Poor JuJu.  She just rolls with all of it and keeps on going, so we do, too.

Its been a medical kind of week around here. My great aunt is in the hospital with blood clots.  My grandfather was taken in for faulty heart stents and is having surgery Monday morning.  My uncle had invasive surgery in Philly on Friday to investigate a suspicious mass and they found aggressive thyroid cancer.  Several children who are dear to us went into the hospital this past week for various conditions. It's just been that kind of week, I guess. So in the grand scheme of things we are thankful.  Thankful for good health, happy times with family, wonderful medical care, and an in and out visit.  Praying for healing roads ahead for all the rest... 

Fall PA Getaway

The kids and I decided to take a little getaway.  Our schedules have been really busy lately and it feels we're always going and doing.  We decided to head up to PA to visit family and enjoy some fall fun.  The northeast is an amazing place to be this time of year.  When God created fall this was truly the palette He worked with.  You forgot how awe-inspiring it truly is until you are immersed in it everywhere your eye can see.  It's like the world has been wrapped in elaborate paper with all the trimmings.

The scenery was so beautiful, we just had to move the schoolroom outside.  I love that we can take our show on the road whenever we get the urge :) Ah, learning the way it was meant to be.

Grandpa was always ready for a quick pickup game during their breaks...

We've been taking lots of walks around the neighborhood, too.  The kids love to gather as many different shapes and colors of leaves as they can find. There's just something about walking on a rainbow-colored carpet that inspires a person to do a little dance...

But with the beauty of all those leaves, also comes raking- daily raking, or you might be buried till spring! Carter and Grandpa were quite a team.  And Mimi was on hand to deliver hot apple cider to the two hard workers.


All those piles are just irresistible for jumping...  

Unfortunately my plans for a week of fun outings with the kids was waylaid.  I was sick when we arrived and continued to get sicker.  It's been a long time since I had a fever for an entire week and couldn't even get up during the day.  I learned to appreciate the view from the inside looking out and be thankful in the stillness. Not a bad view...

I finally ended up seeing a doctor by the end of the week. Did you know they have clinics in aisle 2 at the grocery store?!? Crazy! Right between the apple cider and the cereal.  Turns out I have bronchitis and strep.  A few prescriptions later and I was sent home to rest and recover.  Good thing we're here.

The kids stayed busy nonstop with my parents...

and their great-grandparents.  I love that they have this time together to just relax, play, and enjoy each other.

They just opened a brand-new, state-of-the-art, huge playground in my parents neighborhood.  It's an amazing place! Here's a shot of just half of it...

Carter and Grandpa had lots of sports on their docket for the week.  They hit a round at the 3-par course.  Carter has quite a game these days.  He hit all the fairways on his drives and consistently two-putts every hole.  For someone who weighs as much as his clubs, he sure finds the power from somewhere.  They also went to a Friday night football game at Mimi and Grandpa's alma mater.  It's been a few decades since Grandpa's quarterbacking days! Carter was so excited to be watching football and staying up late...

In typical Carter fashion, any night spent watching sports is followed by a day of reenacting and playing that sport...

Julia started cheering from the sidelines...

...but soon was right in the middle of it!

At the top of Carter's to-do list on every trip to PA, is playing Marines with Grandpa.  They get all their gear and uniforms ready and head down to the hills behind my dad's childhood home. 

My dad and his brothers and friends grew up in this boy's paradise and know the torch has been passed on.  It is the old Thomas Iron Co from the 1854.  They produced the steel used to build the Holland and Lincoln tunnels.

They draw up their maps and plan out elaborate logistical setups...

...then they play.  Those of you that know Carter can only imagine how much he loves this.  I don't think it could get any better in his book.

for this little, future Marine...

The week didn't exactly go the way we had planned in advance, but it turned out to be full of fun and special moments with family.  I didn't want to have to spend it on the sidelines, but sometimes we don't have a choice.  I was just happy to be able to take it all in and treasure the moments...

both touching and funny!

David Crowder*Band

Last week we had the privilege of attending the David Crowder Band concert at our church again.  We were so thrilled they were coming back.

Time for date night!

...dollar tacos- mmmm!...

and two tickets with my man to the best show in town...

It was a powerful night of music and worship. They did not disappoint.  They have an amazing gift to take the power of words and music and turn them into a simultaneous personal and corporate worship experience for thousands of people at the same time.  The first time we saw them live was back in February 2009.  For the days after I wanted the experience to last and was streaming their music from their website everyday.

Little did we know a few weeks later we would be sitting in a surgical waiting room, waiting to hear if our daughter had cancer.  As we were waiting I was streaming DCB's Remedy album over my laptop.  The OR nurse would call the desk phone periodically and update Julia's condition.  It was around 6:30pm that we finally received confirmation.  As I listened on the phone, she said Julia was doing great under anesthesia and they were preparing to install the portacath in her chest.  That was our first confirmation that she did indeed have cancer.  

As I hung up the phone and walked back to our seats, I confirmed the news to everyone as the tears streamed down my face.  We sat and cried as the facts settled into everyone's hearts and minds.  It was a sacred space where the world is suddenly stripped away.  So raw, yet beautiful as we found the space to still worship. As the music played, the words from The Glory of it All spoke to my heart in a completely new way.  I could feel God's reassuring HOPE reaching down to right where we stood at that moment.  I knew at that moment...

• that we can give God glory in anything that happens in life.  The battle has already been one and we can rejoice in His victory in all things- not just the good, but the bad, too.
• that His HOPE gives life in every situation.
• that God will heal everyone in His way, and in His perfect time.
• we will never be the same because we have given our lives to Christ and we will never be the same because we have walked through the fire of childhood cancer, but He will never change and in that we can stand.  

Oh, the glory of it all

Is He came here
For the rescue of us all
That we may live
For the glory of it all
Oh, the glory of it all

All is lost
Find Him there
Find Him there
After night
Dawn is there
Dawn is there
And after all
Falls apart
He repairs
He repairs

Oh, He is here
With redemption from the fall
That we may live
For the glory of it all
Oh, the glory of it all

After night
Comes a light

Dawn is here

Dawn is here
It’s a new day, a new day
Oh, everything will change
Things will never be the same
We will never be the same

Tears stream down my face reading them even now. I am so thankful to say that even in those darkest hours we felt God's peace and could say with conviction that everything that happens is for God's glory. I know that with every fiber of my being. I believed it before cancer and I still believe it today. Without that truth there is no hope or peace in this world.

Being in that waiting room that day with Julia in surgery, so many questions, so many risks, and the reality of cancer upon us; it was the closest I have felt to the disciple Peter when Jesus asked him to get out of the boat and walk on the water. We were taking that leap of faith and stepping out even when we couldn't see solid ground. As scary as it seemed at the time, I would rather be on the water with my Savior than on solid ground without Him.

We have heard this song many times throughout this journey.  It has miraculously played in some really tough moments along the way, either popping up on my itouch or playing on the radio.  God has faithfully reassured our spirits and walked alongside us in the painful and sad moments and our worship has continued.  When they sang it live at the concert last week, it was a full circle moment.  We were on the other side now and we were still praising Him with the same words.  

The words of this song have become even more meaningful as time goes on. God continues to prove Himself faithful and trustworthy. Our faith continues to deepen. Our testimony grows stronger. Our witness shines through. His grace covers ALL and sustains us each during the hardest of times. We continue to find ways to express gratitude even if the toughest of times. And we know now we will never be the same, but we will ALWAYS be His and on that alone we stand.

• 
  

Fall Frolics

It's finally beginning to feel more like fall and we've been getting in the spirit of the season.

fun with friends...


some fall football...

yummy fall flavors...

(this recipe can be found on my recipe blog)

funny-feeling pumpkins...

happy nights at Awana...

flu shots (SO much easier to find this year!!)...

lazy afternoons with sweet babies...

and bedtime storytimes with friends...



A harvest of blessings abounds in our hearts and home!

Fall Ball Finale

Fall baseball has come to an end.  It was a busy season in our household.  We weren't sure if Carter would decide to play soccer or baseball.  He was so excited about making the cutoff for the older league he couldn't wait to play.  At the first skills test night, they ended up being one coach short for the number of teams needed.  Daddy graciously stepped up and took a risk.  Now it was time to learn the rules, practice his pitching, learn to coach 6-8 year olds, and manage a team.  He jumped right in with both feet.  The practices and twice a week games quickly filled our calendar and Daddy's truck became a rolling sporting goods shop and team shuttle bus.

With Daddy coaching and pitching, some willing parents helping with field coaching positions, Mommy keeping scores and stats, and Julia cheering from the dugout; we were off and running.

It was an action-packed season.  Two of the teams came out strong with large coaching teams and set the bar high.  Our Purple Panthers had the skills, knowledge, and abilities to compete, but those elements didn't always appear when needed.

As the season went on they really started to click.  Their hitting picked up, their plays were smarter, they were backing each other up, and their throws and catches were more accurate.  I get so emotional watching these kids play.  They are so transparent with their feelings, struggles, and successes.  You can't help but experience it all right along with them.  There is nothing quite like kids sports.

 

 

We wrapped up the season last week with a big win on the last night.  The kids were hitting well and made some great team plays. It was a joyful ending for all. We are so proud of the kids for all their efforts and dedication.  And great job Daddy, you found coaching skills you didn't even knew you had and really inspired your kids to be the best they could in all areas.   We're so proud of you!

See you in the spring!!