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.

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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!!

Pumpkin Day

It seems like fall has arrived almost overnight.  It has been so hot the past few months it felt like the never ending summer.  I remember driving home from the hospital after Julia's scans last week and it seemed the sky had suddenly become bluer and the trees were beginning to pop with color.  Then it hit me that October was almost over! How does that happen?! We decided to embrace the season this past week.  We kicked it off with a trip to the pumpkin patch...  

I love how excited the kids get about choosing their perfect pumpkins.  Their criteria are all over the place, but they take it pretty seriously. 

Julia's had to be nice and round and have no stem.

It was the perfect way to spend the morning.

We decided to turn it into pumpkin day with some of our fellow homeschool families with kindergarten and first graders.  We are so blessed to have so many friends who do this, too.  There is always someone to get together with.  We had a great science lesson on classification...

 

and then explored the squash family...

We enjoyed some pumpkin stories and science books and then pumpkin snacks. The kids made their own pumpkin life cycle cards...

sunflower art...

pumpkin painting...

and we ended the day with games.  Who can resist a sack race?

Cancer Moms and Lemon Drops

Many times people ask what it is like to be a cancer mom? Or how do you do it all when your child has cancer?  How do you deal with life, death, and suffering?  There is no easy answer.  But this is the closest I have ever seen.

Every cancer mom has a song playing in her heart for always.  It is a complex song of joy, strength, suffering, loss, victories, love, hope, friendship, gratitude, determination, and longing.

A fellow Wilms' mom has found the words to the song and written them down.  Take a moment, grab a tissue, and read Lemon Drops.

One Year OT Scan Day

Today was Scan Day! One year off treatment.

We talked about it yesterday and Julia asked what was happening at the appointment today.  I went down the list from the top.  With each one she said, "Yay, I like that one." Until we got to the finger prick.  She is really not a fan.  I think it is one of the most dreaded by all these cancer kids.  Give them a port access any day.   It still surprises me that she accepts all of this as a part of life and actually enjoys it.  Her brother was spending the night with her best friends and enjoying a fun playdate while she was NPO and hanging out at the hospital.  But she does it joyfully and with a smile on her face.  She truly enjoys being here.  When I say Camp Brenner is part of our family, it is true.  And for Julia, she does not remember her life before this.

We started in radiology with her ultrasound. I can't help but watch these days.  The techs don't talk about it while they do it.  I'm getting quite a lesson in anatomy.  I can now identify the gall bladder, spleen, liver, common bile duct, kidney, and bladder on the screen.  Now if I could just get one of these machines in my own living room, we could ease a lot of scanxiety around here.  I know GE sells a portable one, how long until the iTouch has an app for that? We could just add it to the nightly routine- bath, pjs, teeth, books, scan your abdomen for tumor growth, prayers, kisses, sweet dreams for all :)  

She finished her ultrasound and they told us to head upstairs.  I asked about her chest x-ray and they said that was scheduled for next week.  What?!?! here we go again. Apparently the new scheduling system still doesn't work.  Back out to wait while they discuss amongst themselves.  Fortunately everyone in radiology was cheery and helpful today (and there was NO ONE else in there) and they decided they could squeeze her in. Good for everybody since we weren't leaving without one. We've had so many by this point we could probably do it ourselves.  Do you think they'll ever add a self-scan aisle like at the grocery store? It would save us all time and money :) 

Then we headed up to the clinic to check in.  Julia couldn't wait to see Ms. Betsey and got right to work on her art project for the day.  They are reorganizing the entire floor and Arts for Life now inhabits the old enclosed waiting area.  It's exciting to see them in their own space.

They called her back for vitals.  She looks good.  She actually lost a few pounds.  Her post chemo binge seems to be over.  Many young kids eat excessively for the number of months they were in treatment.  As if their little bodies are making up for lost time.  Julia was definitely following that pattern, eating around the clock.  Recently, it has tapered off to meals were she actually eats very little.  Much more typical healthy preschooler behavior.  We finished with Nurse Tammy and she wanted to head out to the art table.  One thing was standing in her way... the finger prick.  She sat in the chair, outside the lab, whimpering over and over that she doesn't want to.  I reassured her over and over that she didn't have to like it, but we still had to do it.  She didn't put up a fight, just cried while we did it.  Then after her bandaid, all was well again.

Nurse Karen came to find her to head into a room.  She hopped up on the table and started coloring.  Amazingly, being NPO didn't even phase her today.  She never asked for food or even water all morning.

We had fun catching up with Ms. Diane.  She loves these kids so much and finds a way to have fun with each of them.  She was happy with Julia's progress.  Her labs look great.  All her blood counts are back to normal now and staying there.  We talked about her GI and urology issues.  Yuck.  This part is still a mess.  We are continuing with Dr. Fortunato's plan of daily dulcolax suppositories and miralax.  We have been skipping a dose every week and unfortunately there has been no success.  We are still in status quo mode.  She talked about the future options.  There will likely be a colonoscopy.  If they find a section of the colon has stopped functioning (the general consensus right now) it would need to be ressected.  She touched on that process, the surgeries, the colostomy, etc.  ughh.  The crazy part is, the routine we are in now has started to feel normal.  I try not to think about the next steps.  We'll cross that bridge in six more weeks.
Then we moved on to the urology issues.  We have been attempting re-potty training.. round 3.  It was impossible when she was on heavy dose laxatives, but now that we are controlling the situation, we have an 8-hour window we can practice in during the day.  She has been doing quite well the past week and then two days ago she started screaming it hurts when she pees.  This happens every time, despite our many extra precautions.  Her urine looked okay in the lab report, but they sent off the cultures to be sure.  They did not have any answers, so we're heading back to Dr. Hodges (urology) for his assessment. 

While we waited for the radiology reports to come in, she headed out to chat with the fish.  She has names for all of them and can honestly tell them apart!

The report? NED!!! Julia is ONE-YEAR CANCER-FREE!!! 

Nurse Karen looked it up for us and printed out all the reports.  She did not have any noticeable spots on her lungs.  We praise God for His healing.  Her ultrasound report showed no evidence of tumor growth.  She does have some enlargement of her remaining right kidney suggesting early compensatory hypertrophy.  There is also diffuse thickening of her bladder wall.  All of these issues will be addressed when we see Dr. Hodges.  Right now we are just thankful for no evidence of masses or metastatic disease.  I must say though the "Conclusion" section makes me laugh...  "Absent left kidney compatible with prior radical left nephrectomy."  (translation... There is no left kidney because they surgically removed it.)  I could have told you that without the ultrasound!

Julia really wanted to finish her art projects (instead of getting something to eat!) She made an adorable squirrel.  You can see him standing next to her.  He has a cute purple, tie-dye colored stuffed tail :) She noticed the scrap paper was shaped like a rabbit and she and Betsey turned that into another project.

Then it was time for some lunch and we were on our way.  It was one of our fastest appointments.  The new system in the clinic seems to be working well.  Labs and paperwork were incredibly fast and we were in and out in less than two hours.  Then we headed to pick up Carter.  The dreary, rainy morning gave way to some glorious cool, fall sunshine.  Julia was eager to play with her friends.  

They set up there own pet store outside.  Julia was happy to be the puppy.  She loves to be a dog, play dogs, talk about dogs, read about dogs, draw dogs, play with her stuffed dogs, anything that doesn't involve real ones :)

We are so relieved to breathe again for the next three months.  The kids were excited to say "one-year cancer-free!" Such an incredible gift we have been given, like a free pass for the day.  It does not erase the past and it doesn't guarantee the future, but for today we will hold it up and smile in gratitude, thanking God for his mercy and grace.  The cancer journey is a lifelong marathon of smaller segments.  We have reached another mile marker and we are thrilled to be here.

So we'll head to CiCi's to toast this new gift and celebrate:)

It's That Time Again

We have been busier than ever these days with  playdates, picnics, MOPS, day trips, and

field trips...




baking (and tasting!)...

Awana...

homeschool work and projects...

dance class...

lots of baseball practices and games...

and today we were surprised with free tickets to see Veggie Tales Live when a friend won them online.  It was a great time! Lots of laughs, singing, and dancing...




It has been the perfect distraction.  We are just too busy to have time to think.

Tomorrow is Scan Day.  We start bright and early.  We are supposed to be in radiology at 8am.  (Julia is not usually even awake by then.)  But early starts are always good when you have to be NPO.

It's hard to believe it is here already.  The scanxiety is the same.  My last post explains how we feel.  As time goes on, it is still the same, you just find new ways to do life around it.  Thank you for your prayers.

Until tomorrow...